The elderly patient stared back at me with watery, vacant eyes while I leaned over to listen to her lungs and complete my assessment. Her lungs were clear and her heart rate remained steady and slow. She reached up to pull at her nasal cannula and her daughter quickly replaced it, saying, "Now, momma, leave that be. It's your oxygen. It's gonna help you."
I sat down near the bedside with the daughter and granddaughter and we talked about the patient's course: she had ongoing dementia and recently suffered a fall and a broken hip. After surgery, she had a stroke that affected her ability to swallow and the family was faithful to follow her wishes not to have a feeding tube. Because of some pain from her hip, and some restlessness, we had admitted her to inpatient hospice care for symptom management. Now, two days later, her pain was well controlled and the patient was resting comfortably with no further need for interventions that could only be provided in a hospital/hospice house setting-care often referred to as general inpatient care or GIP.
I talked with the family about what had happened over the previous two days: her pain was better. Yes, they agreed. And she was calmer and appeared more comfortable. Yes, they saw that, too. I also pointed out that while she continued to take the occasional bite of ice cream or applesauce, she was not able to take in enough calories to survive over the long term or to be able to go through rehabilitative care.
As gently as I could, I told the family she would need to be discharged to home or to a nursing home setting; either place, hospice would come and take care of her there. Although we had covered this thoroughly during the hospice admission process, it seemed to be new news to the family at this stressful time.
"What are you talking about? You can't make her go home! We can't take care of her! I have a bad back, and I can't pay caregivers. No! You cannot send her home." She crossed her arms and leaned back in the chair, her face set and angry.
I listened and made a conscious effort to open my hands, palms up, while working to keep my facial expression neutral. I asked her a few questions about the home situation, looking for clarification. She raised her voice and became more agitated. Her daughter, a young woman probably in her 20's, put her hand on her mother's arm, obviously trying to calm her down. The daughter got up and stormed out of the room. The daughter raised her eyebrows and shrugged as if to say, "What do you do about that?"
Hospice's goal is to primarily take care of people in the home. The team is set up so that the nurses, aids, social workers and chaplains, visit and care for patients in their familiar home setting. Sometimes the "home" is a nursing home or an assisted living or even a family member's home. Wherever "home" is, hospice will come to them there. The hospice services in and of themselves are almost always covered by insurance and they are covered 100% by Medicare. But the "home" itself, is private pay. So if the patient needs to be in a nursing home, hospice comes there to care for them, but they are responsible for the room and board at the facility.
While this makes good sense when we are cool and rational, it can come as the final straw for an overwhelmed family who has used up all their emotional, physical and financial resources caring for a loved one who has been ill over a period of time. People generally don't understand or don't remember that this is the place where those who can afford it employ long term care insurance. For others, it can be a time of real financial hardship, taking the last of meager resources. For those who are indigent, Medicaid will often be involved in helping cover the nursing home expenses.
During these tense times, the questions can come fast and furious
"What do you mean you don't pay for the nursing home?"
"What do you mean my loved one has to go home?"
"What do you mean she is stable? She is dying!"
In hospice, our job is to listen, to be able to show some empathy and to help the family come to the best solution for them.
I left the room to allow the family some time and space. After discussing the situation with my managers, I waited until a social worker arrived and we went back in to talk with the family again. After more conversation, we were able to reach a solution that seemed to help the family with what they needed the most: time and rest. We kept the patient in the hospital for a few days of respite, allowing the family time to process, recovery physically, and make arrangements to care for her well at home with a rotation of extended family members.
By the end of the day, there were hugs and comforting words all around as the family resolved to go home for a bit and get some "real sleep," but most importantly, the patient was resting, comfortable and appearing to be at peace.
What has been your experience with GIP/respite/home care and the interface between these three? Do you have any insights on how to make these transitions easier for everyone?