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?
CeciBean, ASN, RN
82 Posts
I worked in home health from 1990-97. When I first started, home health and hospice were together. There was a pretty seamless transition if one of our patients was made a hospice patient; they had the same nurse, the same aides, everything. They just had a different level of care. It was much more comfortable for them and their families. We would also get some patients who were admitted directly as hospice patients. At the time, we had 7 nurses in our agency who had regular teams plus a weekend and an evening nurse who covered most visits that occurred during those times. That meant basically that every nurse with a team of patients usually had one or two hospice patients in their patient load. We received regular inservices on hospice topics as well as on other home health topics, and it worked well for all of us. I felt then, and I still feel, that the worst thing Medicare ever did was to make hospice a separate entity. Our patients did too. We had instances where patients would refuse hospice care because they didn't want to change nurses and I can absolutely understand that. As nurses, we would have group discussions about our patients, especially about those who were near death. Those discussions helped us handle our own emotions, because of course we were often pretty attached to patients we'd had for a long time. But also, I think, as home health nurses in those days, we recognized that death is a part of life. Most of us in that agency were experienced and were not young so that may have helped.
With respect to my own family, my experience was mostly positive. Both my parents lived into their 90s. My dad had dementia and had been hospitalized with pneumonia right after Christmas just before his 91st birthday. We made him DNI at that time but did allow aggressive antibiotic treatment. (Since then, my brother, an internist, and I have agreed that we probably should have gone with supportive care and just let things run their course, but hindsight &c.) He got better and was sent home, but a couple of days later he fell and the home care aide couldn't get him up. At that point his doc and my brother decided he should go into the hospital and be admitted to rehab. Well, rehab, at a wonderful veteran's rehab center/nursing home, lasted exactly 3 days until he informed the therapist he wasn't going to do it...and when Dad said he wasn't going to do it, that meant he wasn't. So he was moved to the nursing home wing. Mom and the dog visited frequently. The last picture I have is of him asleep with the dog curled up beside him. He was DNR and died about a week later. Mom was able to stay home with live in help who became like family to all of us and still are. She declined slowly, went into multi-infarct dementia, and died at the age of 95, having been placed on home hospice about 3 months before her death. She had contracted some kind of viral respiratory thing and had stopped eating and drinking. I was not able to be there, but my daughter and her husband were with her. It was apparently very peaceful. That's how I would wish to go.