Hello -
I have read a couple of articles on palliative care -- and it looks like we should have started it awhile ago for my mom. But, it doesn't look like we should be looking at hospice, if my mom is in a trial -- since from Dr. Ramchandran's article -- "Hospice is appropriate for any patient with an advanced illness who no longer benefits from curative or life prolonging therapy." I am assuming a trial means we are in / attempting a curative or life prolonging therapy. Right?
My questions:
1) How do I request palliative care for my mom? Is it through the oncologist? Through a GP? Some of the doctors I have spoken to have different definitions of palliative care - and some doctors don't believe my mom is "there" yet.
2) We just kicked off PDL1 - it can take from 6-9 weeks before results appear. The next scan isn't until 9 weeks after the 1st infusion. In that time period -- what should we do, if my mom appears to be in more pain? Do we assume the cancer is spreading more? At what point, would we need to consider hospice or stop the trial? Or do we keep on the trial until the "end"?
Thanks for the help!
Reply # - October 13, 2013, 08:04 AM
Reply To: Palliative care, hospice while on PDL1 trial
Hi datgirl,
Palliative care is not the same as hospice. It refers only to a focus on patient comfort and management of pain and other symptoms. It can be requested at any time it is deemed necessary. You can talk to your mom's oncologist about palliative care services available at your hospital/cancer center.
You can read Dr. Harman's presentation on palliative care here: http://cancergrace.org/cancer-treatments/files/2012/07/Dr.-Harman-What-…
As far as increasing pain, if that happens you will want to discuss options with her oncologist. If possible, the pain could be managed until the scan is done, at which point you'll know whether the cancer is progressing or the treatment has been effective. On the other hand, if pain increases and her oncologist feels that the cancer may be progressing rapidly, it may be necessary to stop the trial treatment. Hopefully that will not happen.
JimC
Forum moderator
Reply # - October 13, 2013, 10:25 AM
Reply To: Palliative care, hospice while on PDL1 trial
Hopefully as the trial drugs work the pain will subside. For most there is great pain relief as the tumor shrinks, until then pain management is standard. As Jim has suggested the blog on palliative care is very informative. In my husband's case his oncologist plays the role of palliative care giver and therefore manages pain and comfort care issues. So far this has worked well for us, with the onc's whole staff working with D and me to address our needs. I've seen one good pain med pill make all the difference in a person.
All Best,
Janine
Reply # - October 13, 2013, 11:32 AM
Reply To: Palliative care, hospice while on PDL1 trial
As Jim and Janine have indicated, "palliative care" isn't a specific intervention or program in many cases -- it just means that you focus on symptom management and comfort alongside other interventions. That can be done in many capacities. In fact, one of the appropriate criticisms of the seminal paper by Temel and colleagues published a couple of years ago in the New England Journal of Medicine was that the authors don't really describe what being seen and treated by their palliative care team entails -- it's just a black box of "seeing a professional dedicated to palliative care" and whatever happened to happen. That doesn't necessarily mean that a palliative care specialist is the only person who can address symptom management, discussion of end-of-life concerns, etc.
I also agree that it's appropriate to hold off on hospice while she's being actively managed on the trial, but if she's experiencing a clear decline after a few weeks, it's probably fair to conclude that the treatment isn't working. In that case, it'd be appropriate to move up a scan and make sure or even strongly consider switching to hospice based on the extremely high probability that a clinical decline represents progression of the cancer despite treatment on the study.
Good luck.
-Dr. West
Reply # - October 14, 2013, 01:46 PM
Reply To: Palliative care, hospice while on PDL1 trial
Thanks everyone for your feedback and comments. I do read your feedback via email IMMEDIATELY -- but takes a little while to get back online to the forum. I just wanted to say THANK YOU for your quick and thorough responses. It's such a relief to have somewhere to go with questions and know that I will get thoughtful answers. And, just as importantly, not get reprimanded for asking too many questions (which by the way has happened, and we are a bit gun shy now to call our doctors).
Reply # - October 15, 2013, 06:23 AM
Reply To: Palliative care, hospice while on PDL1 trial
I just want to send best wishes your way and hope your mom responds well to the trial. I agree with you and felt the same way during my husband's cancer journey, it was a relief to know that I could come to GRACE when needed!
Lisa