Hello folks, visiting from the path board. I am currently 69 and have a 3c 4+4 prostate cancer which will probably get me. I saw too many folks with bone mets and pain and it ain’t gonna happen to me. Can hospice , routinely and without it being a big deal with the pharmacies, etc. provide excellent control of pain from bone mets. I am concerned about this so much because it seems to take an act of congress and the DEA and the pharmacy cabal to get a couple hydrocodones for a root canal. It really concerns me. I would prefer to die at home.
Hello,
Thanks for sharing and I certainly wish all that you wrote wasn't the case.
You would be well-served to get established with a palliative physician now -- even if asymptomatic currently.
This is severalfold in reason:
First, it is much nicer to get established with a team when the water is calm --in hopes of avoiding the scenario where a full blown storm strikes and THEN trying to get [symptomatic] rescue from scratch. Not the best route to take.
Your team will get to know you now: your aims, your goals, and what worries you. They will help you navigate the decision of treatment if that is still on the table for you -- or if not, then they will help with your transition to benefit from hospice services when the time arises. There are all sorts of hospice agencies out there and the great majority are fantastic, some are predatory. It is nice for you to have your palliative doc's feedback help guide your decision regarding local agencies. That said, in my book, you with only that diagnosis are not hospice eligible at this time. Granted that does vary slightly depending on the individual medical director's framing of your condition and how aggressive or liberal the agency wants to be with interpreting guidelines -- but at least at my organization you are not, it is folks with stage 4 disease.
That said, again, you are not left hanging necessarily, because, with the cancer diagnosis present, it should be the pleasure of any palliative clinic to meet with you and they offer the same level of symptomatic support.
Hospice is just a flavor within the house of palliative medicine.
Both palliative docs and hospice docs have some leniency from roadblocks with prescribing for cancer-related pain. That said, there are a number of adjuvants to try first which would hopefully help you avoid opioid-related side effects as long as possible -- esp with bone mets. Hydrocodone is crap IMO. If someone requires an opioid, treat with an opioid -- if tylenol is being used as an adjuvant to support the opioid then keep it out of the same pill and treat with appropriate doses of tylenol.
Hospice aligns nicely with your current goal of dying at home...granted that is not a prerequisite for hospice care. Also perhaps you know this already, but the term "routine" means a specific level of care when it comes to hospice (routine care, continuous, inpatient, respite). When someone is enrolled in hospice services, all those levels of care are available to them -- however, which degree being received depends on their current symptom burden and steps needed to get things under control. So you don't need to worry about finding a hospice that can provide "routine care" as they all do, as they do all the other levels too.
To answer your question at face value: yes hospice services can provide excellent pain relief from bone mets for folks at end of life. However, that is not always able to be achieved in the home setting. For example, ketamine/lidocaine/PCA's etc are rarely done outside the hospital [in the USA]. Also, it should not be the goal to get you/keep you pain-free (0/10) that is an impossible target, and instead, the goal should be to keep your pain manageable levels where you can still function and enjoy your hobbies/life. You control your pain, the pain doesn't control you.
The overarching philosophy for hospice would be to get you living as well as possible as long as possible -- but not to necessarily to live as long as possible (i.e. disease directed curative therapies). On the other hand, if someone still wants to seek curative therapies, they see the palliative team where they can get great symptomatic care while still getting their chemo/radiation/etc.
Anyway, you would be well-served by visiting a palliative doc and are welcome to PM me to discuss more as this might get locked as a "medical advice" thread.
