Post CES reflection on role of technology and Alzheimer's.
Boston, mid-May, 2016
This rant is not about technology - it's about communicating. In one short week, we have read about a doctor who refused to turn off a pacemaker in a frail and demented man ('it would be like putting a pillow over his head') -- at the request of his wife who was falling apart caring for him. We have learned that doctors now recognize hospital-stay induced delirium among the elderly -- and (wow!) even see that it can lead to dementia or death. And we read an AARP Bulletin 'human interest' story about a woman who escaped from a nursing home, where she had been placed after discharge from a hospital.
What is fundamentally wrong in each case? Let's assume that it has not been nor will it ever be the doctor's role to consider quality of an older person's whole life (either before or after their treatment). There is a lot of blah-blah-blah lately about the transactional nature of healthcare -- how the doctor is compensated for 'treating', not for counseling, not for assessing the whole person, not for examining assumptions about their status or where they will go next when they leave the hospital. Basically, the doctor's view is narrow-cast to see an elderly person in bed with a diagnosed condition and possible treatment. This seems unlikely to change -- but others could -- who should?
Discharge planning -- isn't. Decision-making about a next step or stage need not be as narrow-cast as the doctor's role and perspective -- and certainly not the fire drill of discharge planning (patient needs to leave tomorrow, whither goes the patient?). In the case of the AARP story, all of the services the protagonist needed were available but not visible at the point she was discharged to a nursing home. Instead, she spent two years there, lost all of her possessions and apartment, went on Medicaid and then discovered she could use Medicaid-paid services to get OUT of the nursing home and back on her own, with a complete range of home health aides, delivered meals, PERS, wheelchair access, etc.
Patient status assessment -- isn't. When my father had a heart attack in 1994 at age 79, he was hospitalized for the first time in his life. An alert and observant man, he suddenly became delirious (medication? fear?) and family members were asked repeatedly if he had dementia -- before he died in the hospital two days later, undoubtedly with the words 'dementia' and/or 'confusion' on his chart. Sixteen years later, 'hospital delirium' is a recognized condition that affects one third of patients over 70, more if they are in intensive-care or post-surgery, and doctors are trying to prevent or treat it, recognizing at long last, that 35-40% of those elderly who experience delirium in the hospital die within a year.
Family decision-making about care -- isn't. Warning, the pacemaker story is the most difficult to read. Families were initially part of the decision-making process to treat a serious heart condition, of course. ('Do you want your father to die? No, of course not.') So the pacemaker is inserted at the agreement of all. When the quality of his life is reduced to near-zero and caring for him is killing his wife, it came to pass that disabling a device with a very long battery life is no longer a family decision. Now the doctor has to agree (he didn't). Flash forward to today -- families are allowed to request turning off a pacemaker. If the doctor can't deal with it, it's now okay to call in a colleague.
Early on, early alerts can improve decision-making. In each of these scenarios, an advocate for the patient discussing a few simple questions and concepts in earlier stages would have made all the difference. Alert: pacemakers don't deteriorate, people do -- what are your thoughts about this future later stage and are we agreed on what we will do? Alert: hospitals sometimes cause hallucinations in older people. What are our plans to help your family member avoid them? Alert: discharging to a nursing home isn't the only choice -- there are services and alternatives that are best considered before a person loses everything.
In 1994, I couldn't have adequately researched hospital-induced delirium in the elderly. Devices outlasting minds and well-being, who would have thought? Widely available checklists for evaluating independent living options? No way. Today, not to learn about, not to discuss with health care professionals and discharge planners -- and not to have health professionals discuss these issues with families? Not acceptable.