Dear Hospice Leadership:
You care for people at their most vulnerable time, but mostly your care is for a very brief time. Tidewell Hospice here in Sarasota quotes the average length of stay as 14 days. When we were admitted that’s about how long we thought we’d be with you. But instead we were in for the long haul. Six months before you discharged us. About 3 weeks out. Then maybe 3 more weeks back under your care.
In our situation with a progressive neurological disease, once the precipitating symptom to contact you was brought under control, the disease still progressed but it was a time you should have started to treat us differently. We were no longer on a precipice, but on an unknown and significant decline. But different from cancer!
You could have been so much more help if you had recognized we didn’t fit your norm. Please, please do it differently for others.
It could have started when you first admitted us and made such a big deal about hospice care not being curative and did we understand that. You didn’t understand that this disease diagnosis came with the words “no cure – terminal.” This was not a transition for us.
You should have started our care by doing the research to understand the disease. We wished for clear guidance about the disease course and what to expect from you as symptoms progressed over time. Instead, we had to do the research and provide it to you, and often you ignored it. You need to listen to patient and caregiver knowledge and amass your own knowledge even if just on an as-needed basis. You should have encouraged us to keep our neurologist involved.
You need to educate yourself about typical causes of death for this particular disease. We didn’t look like cancer, but you looked at us the same. You didn’t track the appropriate measures of decline for his disease, which ultimately led to you discharging us and causing us a horrific last few months. You should have told us what you were tracking, especially as the nurses spent so much time doing it in our presence. We could have told you it didn’t apply.
Your must understand which drugs that can’t be used for this disease, and which drugs only work for this disease’s symptoms. For example, you refused to supply the only constipation med that had worked for Larry in spite of us explaining the significance of constipation in MSA quality of life. You insisted we use your formulary, in spite of the fact that he had tried those drugs and they hadn’t worked. EVER.
You should make sure to set more appropriate patient and caregiver expectations about roles of each of the hospice team members including how often a doctor or other provider will be involved and under what cirucumstances. Do this again after the initial crisis has passed. Your people kept telling us we would be getting all the “good stuff now,” like massages. That happened twice in 7 months. And doctors – never. We went from making the rounds of many specialists regularly all for symptom control to never seeing a doctor or PA or NP in the whole time we were with you.
Provide appropriate and timely answers to questions about symptoms that have to be brought by the nurse to the doctor we never saw. We were used to getting immediate answers when we sat with the doctor instead of addressing them to the nurse who might or might not remember to bring back answers on her next visit in a week or two.
Instead of wanting to manage his autonomic symptoms that were impacting his quality of life, you only wanted to manage the pain. And you only seemed to want to manage it pharmaceutically, instead of with other measures. Instead of the equipment your physical therapist recommended for managing pressure sores, you offered pain meds.
You should have educated us on how to prevent or mitigate new symptoms that might be expected as symptoms progressed. Having no experience with pressure sores, we didn’t recognize them as Larry’s mobility declined. There were things we could have done earlier to prevent them. You pretty much ignored them until they were horrific. “That happens,” you said. But he wasn’t even bed bound!
Communicate clearly, empathetically, and honestly. Make sure your phone system works exceptionally well and doesn’t require much effort or time to get to someone who knows me or at least can access my situation. How come my hairdresser can answer my calls with my name but you can’t find me?
Ask your staff to think about where the patient and caregiver might be emotionally and/or physically before they make a phone call or a visit. Too often we were bombarded with something that didn’t fit – whether it was insistence on their schedule and not ours – like coming early in the day before he was awake – or emotions that didn’t meet ours. Don’t bring false cheeriness or false sadness. Look where we are.
Prepare us for changes. You discharged us with no face-to-face, no warning, and no help to replace your care. I know from my healthcare experience that transitions of care are always hard, and I’ve seen them botched many times. But I’ve never completely experienced such trauma.
Because of the lack of palliative care services, once we were discharged we had no where to get coordinated help. We made the rounds of individual specialists again. And because Medicare required all the qualifying tests to be passed to replace medical equipment that had been provided through hospice, we had to jump through hoops and more hoops, when we were in such a precarious state, emotionally and physically.
So if you have to discharge someone with a progressive neurological disease, give them plenty of warning. Understand what a traumatic event this will be, what a disruption to their lives, and figure out ways to minimize that disruption for them. Don’t tell them it’s “good news.” Give them (not just a fax to the primary care doc) written instructions on how to transition the care. Help them emotionally while they are still under your care because there’s no one there to help them once they are discharged.
The most precious resource you provided us was a CNA to help with showers. Probably the lowest paid person in the place. Treat them well.
This is already too long for you to read, and too upsetting for me to write.
I wish hospice wasn’t our only choice. I wish coordinated care didn’t have to come with a die-in-6-months time frame. I wish you’d listen to me and make changes!