Donna Cusano is currently a healthcare services, wellness and supportive technologies marketing consultant based in New York City. Previously she was Vice President, Marketing, for Living Independently Group (QuietCare Systems). The following Soapbox item was triggered by the How the ‘Old Old’ can have best lives item.
So much of our emphasis in the technology area has been to keep seniors active that we tend to ignore planning for and helping seniors (and their families) to manage their last and usually inevitable years of increasing frailty, and the role that technology in the service of care can play. I don’t know of many cultures that support the ‘old old’ and those that have (Asian Indian, Chinese, Japanese) are increasingly not. Here is a moral, right opportunity for both healthcare and technology. I will make a similar case for the disabled and the support telecare/telehealth can be for them as well.
Unfortunately I think the trend towards treating the ‘old old’ – or even the just old – INhumanely is on the rise, despite… the How the ‘Old Old’ can have best lives article. This unfortunate trend was brilliantly summed up by former Gov. of Colorado, later Sec. Treasury, Dick Lamm as “We’ve got a duty to die and get out of the way with all of our machines and artificial hearts and everything else like that and let the other society, our kids, build a reasonable life.” (1984 and also in his book Megatraumas.)
When healthcare is rationed, ‘outcomes’ become the most important thing, inevitably crowding out questions of what is right or wrong morally. We have a huge danger in the US with a proposed government healthcare plan that subtly lowers care and medical support for the elderly via the smokescreen of ‘counseling’ (the ‘Advanced Care Planning Consultation’ to be given to those 65 and over, every five years.) Moreover it is being spearheaded by a medical ethicist (sic), Dr. Ezekiel Emanuel of the BioEthics Center at NIH, brother of President Obama’s chief of staff. He has frankly and explicitly written about the healthcare system denying care to those with dementia or neurological disorders on the grounds that we should not guarantee services to those who cannot fully and actively participate in what he defines as the ‘polity’. (The original meaning of which in ancient Greece was a narrow group of citizens to balance the elite.)
This civic republican or deliberative democratic conception of the good provides both procedural and substantive insights for developing a just allocation of health care resources. Procedurally, it suggests the need for public forums to deliberate about which health services should be considered basic and should be socially guaranteed. Substantively, it suggests services that promote the continuation of the polity – those that ensure healthy future generations, ensure development of practical reasoning skills, and ensure full and active participation by citizens in public deliberations – are to be socially guaranteed as basic. Conversely, services provided to individuals who are irreversibly prevented from being or becoming participating citizens are not basic and should not be guaranteed. An obvious example is not guaranteeing health services to patients with dementia. A less obvious example is guaranteeing neuropsychological services to ensure children with learning disabilities can read and learn to reason.
Where Civic Republicanism and Deliberative Democracy Meet, Hastings Center Report Dec. 2006 page 13.
The last time this train of thought was quite this popular in Western culture was in the 1930s, another time of economic distress and ideologically-driven societal change. Germany incorporated this trend systemically, extremely and brutally. But the flirtation was there in the US, when the Greatest Generation were but teenagers and young adults. There was a 1937 US movie about an elderly couple’s separation called Make Way For Tomorrow that is about the two – originally quite hale – slipping into the abyss, neglected by their children and thought inconvenient and irrelevant by society. There’s no happy Hollywood ending to the story as they are permanently separated.
Despite all our efforts and the ‘age wave’ a-coming, we who think most about, and are committed to, supportive technologies should acknowledge and resist this growing pressure to isolate and cut off the ‘old old’ from our most innovative care resources and best thinking. And this not only includes the ‘old old’, but also the learning and psychiatrically disabled.. It is moral, right, and in everyone’s interest, including ours.