Open Letter to Hospices

Dear Hospice Leadership:

Original painting of Thistle Flowers
The thistle connotes endurance and fortitude, as well as bravery, courage, and loyalty. It is said you should wear
thistle whenever the stage of your life seems over-whelming. These thistle were at Larry’s funeral.

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!

 

 

 

 

 

Angry Again: How Hospice and Healthcare Failed Us

Painting of anger
Original pastel copy on Shizen paper of Marla Baggetta’s Red Sunset

I’m ANGRY.  Again. Recently I met with Tidewell Hospice leaders after sending a letter full of the ways I felt they failed my husband and me with their care.  They robbed us of our quality of life in the last few months.  I came to the meeting with a list of ideas I had about how they could do a better job for patients who have neurological diseases, rare diseases, or lengthy stays.  I sent the list by email after we met.

It took a lot of energy and courage to meet.  I had to prepare by reviewing the worst months of our lives.  I had to manage the anger and sadness that welled up every time I sat down to write down my thoughts, just as I am managing it now – my shoulders and neck tightening, the tears welling up, the lump in my stomach.

I haven’t heard back though it’s been 6 weeks.  Not a thank you for your time, not a sorry, not any info about actions they are taking, in spite of them telling me they would be taking action.  I did receive a request to leave them a legacy gift – mention them in my will.  HA.

I met with the CEO, the Medical Director, and the Nurse Director of Home Care teams – people who have the power to take action.  My fingers are shaking as I type, full of the impotence I felt while they provided their care, and my continued inability to affect change.

As I look back over the course of his disease I see so many gaping holes in the healthcare system for his neurological disease, that seem more readily filled in the field of cancer treament.

I remember when he first received the Parkinson’s Disease diagnosis after 5 rounds of previous specialists and incorrect diagnoses.  We went to this new neurologist expecting to talk about surgery to mitigate what we thought were symptoms of  essential tremor and she just announced it was Parkinson’s.    It was a bomb dropping for us, but she kept talking, though we couldn’t hear her.

Doctors are SO poorly prepared to give bad news! And the reimbursement system doesn’t give them the necessary time to spend on doing it well.

When new doctors started suggesting Larry might have something other than Parkinson’s, I remember one particularly staggering moment.  The neurologist said “it might be ALS, so I’ll arrange some tests.”  He sounded sort of excited about the diagnosis process.  His only advice was “don’t believe what your read online about life expectancy.”

We moved on to the next neurologist who confirmed it was MSA, saying “I know this is rough news.  We will do our best to keep you comfortable and enjoying a good quality of life for as long as possible.”

At least there was some recognition of the emotional import of the news.

But who was the ‘we’  who would help us?  We saw him every three months for 10 minutes.   Who else could we turn to?  Google became our best friend.  We were faced with a terminal diagnosis with no support.

As his symptoms progressed we made the rounds from the primary care doctor to the specialists – gastroeterologist, urologist, dermatologist, neurologist, and then with pulmonology, cardiology.  There was no coordination of care, no teamwork, no place for our emotions.  We had no support groups, as the Parkinson’s groups we’d previously attended were not dealing with the terminal diagnosis that we were dealing with.

I looked for palliative care specialists.  I found one at the hospital and left a message but received no reply.  We weren’t hospitalized, after all.  I asked the neurologist.  He said that palliative care was what you received in the hospital and that hospice was what you received at home, but he didn’t think we’d qualify for hospice yet.

I knew from my daughter who is a researcher in hospice and palliative care that he wasn’t right in the academic definitions, but he WAS right in the practical definition.

In essence it was the practical definition of hospice, the way it is defined and paid for that finally did us in.  Tidewell Hospice’s complete lack of understanding of the course of his neurological disease.  The “six months til death or you’re out” definition, that sent us into a tailspin those last three months.

Okay, I thought I was past my anger but as I write this I realize I’m not at all past it.  I was hoping that the list of ideas I submitted to Tidewell Hospice, which I’ll share in another post as this one is already too long, might at least help provide better care for the next neurological patient, making some good come from our bad care.  But no.  It seems my experience of them not listening continues.

So tomorrow I will write an open letter to all hospices.  I will write all the ways I wish we had received care.