Sunday, December 13, 2009
Thanks to 100+ people who participated in the Pallimed survey on Palliative Care Experience with Intrathecal pumps. Before we get to the results, I am open to collaborating with anyone who would like to take this further and pursue scientific polling with an aim at publishing in a medical journal. This survey was an initial toe in the water to see if some of the same issues I was seeing in clinical practice echoed in other medical communities.
So on to the results. Here are the aggregated responses by question.
Most of the respondents (nearly 70%) were doctors probably reflecting the staff member most likely to have interaction with intrathecal pumps and their programming. It also possibly reflects our reader demographic although in our annual reader survey doctors only make up less than 40% of the respondents.
In asking the level of pain relief observed in patients from their IT pump the responses indicated good success with 80% reporting moderate to excellent pain relief. But in the comments another story was emerging with statements such as:
- accentuates a placebo effect
- Depends significantly on the practitioner placing the pump, pt expectations, and type(s) of pain
- Each and every one had inadequate management
- every patient is different some get great relief, others not so great.
- Have had widely variable experiences from tremendous relief to being perceived as worsening pain!
- IT pumps give excellent relief IN APPROPRIATELY SELECTED PATIENTS, who are rare
- Sometimes work great; many times don't. probably 20% good; 80% not so good
- The patients I have cared for already had IT pumps and were not in good pain control when I met them.
- unreliable d/t apparent blockages in line at times?
95% of people indicated patients on IT pumps were still on systemic opioids despite having an IT pump. I have heard some patients and families report 'the IT pump was put in so we wouldn't have to be on morphine/oxycodone/methadone/etc.' Maybe any future IT pump studies need to have an outcome for mean daily opioid dose reduction or a binary outcome for off oral opioids at 1 month, 3 months, etc.
I asked the question about co-existing existential/emotional/relationship pain because patients with IT pumps seem to already have complex pain by the time I have been getting involved with them (the specialist effect/bias?). So it was interesting to find palliative care staff felt 40% of this patient populations seems to have more non-physical pain modifiers contributing to the complexity of effective management. A possibility exists for exploration of these pain affecting parameters before placement of IT pumps since they are unlikely to be affected by intrathecal pumps.
Access to supportive resources has been an area I have found challenging when working with IT pumps. The key is to be proactive and develop these essential relationships before they are actually needed in a crisis. I am lucky to have two physicians and their teams that have been exceedingly responsive and cooperative in managing these patients. But I have also have had doctors who have never bothered to return multiple calls and made it difficult to do effective ongoing management after the IT pump is placed. These are not 'set it and forget' medical tools. Some excerpts of the 15 comments help give some flavor to the above chart:
- Depends... when I have been covering hospice sometimes we have no access
- Hopefully access to physician either having implanted, or currently managing, the pump. Ideally the pump has come either with pre-written orders for dosage adjustment if needed.
- Just haven't gone there yet, and when referral was sent for inpatient unit; we did not feel we were able to provide the right care without a good system in place for handling this.
- Moderate access to doctors - some are very accessible; others not so much
- None of the docs who place the pumps have any way to help if the patient will not come into the office.
- Nurse in the hospital who manages.
- Pain physicians state they are available at all times however can be very difficult to reach urgently. They may be covered by anesthesiologist who take a hands off approach. Once reached the pain specialist seen to act appropriatly (sic) and be helpful. At times the expectation is the patient will need to seen which may not be possible from the patient standpoint.
- while I have easy access, the patient may not, due to insurance issues.
- work with chronic pain team who has the interrogator. they make the ordered changes
- We need better communication channels with our colleagues in interventional pain before during and after IT pump implantation.
- We need to study patients with IT pumps in palliative care arenas to see what specific characteristics lead to good or poor pain management. Patient selection criteria, management differences, access to qualified professionals, pain modifiers, use of concurrent opioids, psycho-social concerns, and on and on.
- We need to look at outcomes for this patient population in palliative care.
- We need better training on how to best medically manage and practically manage the systems surrounding IT pumps.
- And we need to publish and communicate about this issue beyond this blog post.