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.
© Barbara A. Brenner 2