If you like this blog, pass it on to your friends. Let’s keep the conversation going.
Regular readers of this blog will have read my post a while ago called “Whatever Happened to Preview of Coming Attractions in Health.” I return to the topic now to reflect on what I have learned since posting it, and to encourage more conversations on this very important topic. After all, most of us are likely to be seriously ill at some point in our lives.
I’m active in several ALS communities on Facebook, and posted the earlier blog there. In response, a very helpful person posted information about an manual for people living with ALS published by the ALS Society of Canada.. If you’re interested, you can find it here.
In reviewing the manual, both my partner and I were struck by the level of detail and usefulness of the information, and disheartened that we had not been given this resource or anything like it by the specialty ALS clinic at which I am seen. The Forbes Norris Clinic where I receive care promotes a slate
of 10 Commandments for Optimal Motor Neuron Disease Patient Care, originally formulated by Forbes Norris himself. (In Europe, ALS is called MND – Motor Neuron Diseases.) It’s posted prominently at the clinic.
If you compare the “10 Commandments” to the Canadian manual, I think you’ll agree that the Canadians resource is much more helpful. Turns out that Canadians are good a lot of things besides hockey.
It’s been pointed out to me that the 10 Commandments were written at a time when there were no multi-disciplinary clinics for ALS. I have no doubt that, in that environment, it was helpful for care providers to be
reminded that “positive thinking can heighten morale.” But this is 2012. Patients with ALS have no doubt heard about the power of positive thinking. It’s not practical advice, any more than is “keep the patient involved, informed and updated.” In fact, the 10 Commandments seem directed to the care providers, not the patients.
I have no doubt that staff at the Forbes Norris Clinic know most of the information in the Canadian manual. But I haven’t discovered any systematic or anticipatory way in which they share it. It’s the patients who need to be better informed.
To their credit, some of my care providers read this blog and my Caring Bridge site, and respond positively to my concerns. I’m told that I am not the usual ALS patient. Most people don’t want to know what’s coming because they get depressed. I’m sure this approach of not offering information until it is requested is not peculiar to the Forbes Norris Clinic. But the assumption that people — or their loved ones — would rather not know is just that, an assumption. Why not ask patients and their families how much they want to know and provide the relevant information? Or let them know that the information is available if they want it, and whom to ask for it.
It is simply not helpful to ALS patients to tell them that some center across the country has a good guide, or that the ALS Association (despite all its funding) has symptom management booklets that need updating. This is the age of the internet and extensive
communication among treatment centers. The professionals at the centers should vet the available information, and make it easily available to patients and their families.
And patients shouldn’t have to ask for the information. At every check up appointment, patients should be asked what information they need. And it should be given to them.
The Forbes Norris 10 Commandments say the patient is in charge. I would like to believe it. But to be in charge, patients need relevant information, provided n a timely manner.
© Barbara A. Brenner 2
Barbara, you hit nails right on the head again. My experience has been that the communication (verbal or written) from ALS multidisciplinary clinics is inconsistent and stuck in some kind of time warp.
I very much disagree with the statement, “Most people don’t want to know what’s coming because they get depressed.” Our problem when dealing with ALS was that healthcare delivery could not deliver at the same rate as the ALS. It wasn’t that we didn’t want to know or that we were unwilling to prepare. We sought information and tried to prepare, but it took an ALS-eternity for healthcare delivery to deliver. When people work within a healthcare delivery system that doesn’t deliver efficiently, is it more convenient to hand patients platitudes and pretend that they don’t want to know?
Healthcare deliverers (including ALSA and MDA and docs and clinic staffs) often may make very wrong assumptions about “most people” dealing with ALS… and perhaps those assumptions are conveniently ones that don’t upset their applecarts.
I’m so sorry that you got stuck with ALS, Barbara, but I’m so grateful that you’ve chosen to write about it. Thank you.
Even better than the first post. Thank you so!
Thanks for a spot on post. If I hear one more time about the positive attitude thing I’m going to scream! I have a positive attitude – I’m certain it makes those around me more comfortable. I got lectured so many times by the breathing bitch, who doesnt know anything about me, about needing to relax that finally my husband said he felt that my lifetime practices of yoga, meditation, tai chi and tremendous support system didn’t seem to be creating a cure for me. Then she replied to my query about my FVC number with “oh, it’s just a number – don’t worry about it!”. So I think many providers get more upset about ALS .than most patients and that may be why they can’t easily discuss things with us. I do have to ask for everything. Sure, ALS is depressing but thats an appropriate response. Not knowing and being prepared is going to leave me even more upset. Thank gawd we PALS have the online community. This is where the real info is. Thanks for keeping up you writing!