Hospice from a patient’s point of view
The real story, told by Mike McDonald and re-printed here with
permission. Mike has fought COPD for many years yet volunteered his
webmaster skills to EFFORTS, emphysema.net – a COPD patient driven
and run online support group I found over a decade ago. The
unselfish work and giving of patients from around the world for a
cause, united emphysema patients and helped us learn how to live
and fight this disease and the lack of public interest at that
time. EFFORTS and her past and future angels began the advocacy
fight to survive, educate, and be educated.
Now Mike is in a new phase: Hospice.
“Thanks for so many kind emails both on and off list. This is a very interesting situation and I suspect that there are many misconceptions about what hospice is and isn’t. I thought I’d periodically write in and let people know. As a teaser, I’ll save for the last the fact of this lengthy email that they burst into my bedroom door today under the thought that I might not be coming down for breakfast (or lunch or whatever).
IMPORTANT: It’s clear that hospice experiences will vary wildly by state and somewhat by agency. In particular, the hospice here is now restricted to prescribing no more than 10 days’ worth of a drug at a time because the state was cracking down on unused meds. She said it had gone from 60 days to 30 then to 15 and now 10.
I had an initial visit from VNA Care Network & Hospice from a supervising practicing nurse last Friday:
- My own PCP will continue to act as supervising doc, which I gathered, was not the norm but I did appreciate it.
- The visit was mostly an initial pain consult as well a lot of paperwork to include the Do Not Resuscitate Order. The pain regimen at that point was a beginner’s dose of methadone, vicodin and oxycodone (percocet without the tylenol). She also added nuerontin on the theory that same of the pill was from sort of neuropathy and added another drug that acts as an NSAID (neuproxin? Similar sound.)
- She advised that for things like broken ankles, we should
continue to use the hospital or whatever. For things lung related,
we should call them and if in doubt, we should call them. For
something like a collapsed lung, they would make a judgment call if
I visit the hospital to get a tube in and she said it would largely
be a judgment call based on whether they think I was dying in the
next few weeks anyway.
- In a nutshell, if we call the hospital for something hospice doesn’t cover, we are stuck with the bill. Hospice’s job is to help me through the next whatever months in as much dignity and control as possible but it is not to make me better.
- She spent over an hour on the phone with her supervising doc, my PCP, my local pharmacy and their pharmacy. They cover “comfort” drugs and, except for unusual circumstances, they are hand delivered from a pharmacy in Lowell (nearly 90 mins away).
- She talked about some of the services that they provide including things like spiritual counseling, massages for both me , my caretaker and a music therapist (!), etc.
A driver showed up Friday night with a “starter” kit of emergency medicines including suppository kits, oral morphine, etc.
A nurse popped in on Sunday, took my blood pressure, etc., and wanted details about bowel habits that it never occurred to me to write down. To be honest, I don’t even HAVE a BM scale. (Okay, I’m kidding about that one.)
My regular nurse is an RN and she came in Monday. She –
- Upped the pain meds and delved into my bowel stuff again.
- She advised that Lincare would continue to provide my oxygen equipment with no changes except that billing would go to hospice.
- She thought my color looked good and noticed that my lungs sounded fairly well. She said that she did not think I’d be in the initial graduating class (< 6 mos) and reiterated that some lung patients come on 24 to 72 hours before passing (which always makes me think of Linda’s husband) but some go one, two and maybe a little more years.
- She agreed that if we could get the pain under control, I might get more air in and might be able to get out of the house.
- In the end, she upped the methadone, cut the pill schedule from every six hours to every 8 hours (much easier on my wife), cut the vicodin out and added tylenol. She also added a steroid that begins with a “d” but it not as problematic (hopefully) as prednisone.
My regular nurse came again on Wednesday. Unfortunately, the
social worker came in at the same time.
- I was starting to develop some wheezing problems exacerbated (pun not intended) by all the hullabaloo and all the changes. She threw some more ativan (sp?) into the mix. She offered a hospital bed that I said I’d think about. A lot of the talking was to Pat and not me…I’m slowly becoming a spectator and that’s fine because I’m clearly not understanding everything.
- They made some changes and I agreed to the massage and the musician.
Wednesday night I was very ill with bad wheezing and stuff. I was up all night (after being warned the painkillers might dope me up…right!). I felt better some of yesterday (Thurs) afternoon and after the Halloween kids came though, a neighbor came by. People have been unsure of whether to be a burden or not and I said, “please! Please be a burden.” I feel good to have nice neighbors.
I started getting ill again overnight was in rough shape. My wife wanted to call the ambulance but I was trying to say that I don’t think that that is how this works. Any case, she called hospice but, unfortunately, hospice nurses all have “anonymous” on their cell phones. I have anonymous callers redirected to my voice mail. I was trying to nap in a bed while Pat stepped out two houses down. Lincare and the nurse picked that moment to pull in. I was drowsing and the bedroom door came crashing open. The poor nurse knew they had gotten calls and we weren’t answering the return calls. The episode really started me on a bad tailspin of breathing. It was clear that any exertion or upset was closing things up. Some liquid morphine absorbed through the mouth did a nice job of getting me about 50% open and the nurse and my wife left me for a long conversation. My instructions were to restrict myself to a chair or bed or whatever as much as possible for now.
There’s a little more but I am exhausted writing this much. I had meant to start writing some of this earlier in the week. For now, my breathing is better controlled and we have a better understanding of when to use what pills. I clearly scared the nurse today which embarrassed me a little but I suppose I’ll get over that. I have really given in to letting Pat (wife) take over as much as she can … I think she needs to do it for herself, I *know* that I am not really capable, but I am worried about her taking care of herself (once again reminding me of how Linda W went through this while she was so deathly ill herself).
Not sure where we go from here. We might get the VA involved…I’d like that but it may not be practical. I do think a hospital bed with an air mattress is in my future. We’ll see.
Again, thank all of you so much for your concern.”
God Bless you all, Mike. Someday the rest of us may have a turn
at Hospice and it’s good to get a patient’s experience – not just
Moreover, special thanks for your spirit and volunteering to keep the EFFORTS advocacy patient boat afloat online all these years. Sharon
Thanks for listening …. Sharon O’Hara … firstname.lastname@example.org