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Communicating with the doctor and hospital -- we can do better

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.









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This is such an important post! I try not to get on my "soap box" too much, but as a professional care manager and someone who's been in healthcare and eldercare my whole life, these issues often get me on that soap box.

I regularly talk to families facing these issues, and they are often very suprised by what they are experiencing...which is natural, most of us don't know much about how healthcare and long term care systems operate until we're in the middle of the crisis (and the consequences have already occurred, especially with how fast things move...and the fact that you're in crisis/unwell at the time). Most days I speak with at least one family member who is facing issues with caring for an elderly or sick loved one (hospitalization, discharge, new diagnosis, etc.) and we talk about some of these concerns--and it can be very hard to get across how critical some of this can be. I will often get the response that they want to wait and see what happens, see what the hospital says about discharge (refer back to your very accurate points re: discharge), try to make some calls, etc. Its hard for me not to sound too doomsday, or pushy, but you become passionate about these things when you see what can occur...and the difference it makes if someone is there to advocate for you (who does look at the "whole person" picture and know you beyond a diagnosis/illness) and guide you through the ins and outs of the system. I think it is so important people know that there are professionals who specialize in this area and can help--because though there is a lot of good information out there now, it can also be overwhelming to try to process all of that (again, when in crisis/from long distance) in a very short time frame (and know what to anticipate, questions to ask, other angles to consider--i.e. the woman who could have gone home w/supports vs. a nursing facility...).

Thanks for a great post! Shannon Martin, Aging Wisely, LLC (

Laurie, you distill down exactly where the system is broken and failing. Forgive me for a rant of my own. When you inevitably hit that crisis--and BTW, there are many under the age of 70 who experience hospital delirium--even if you have 'inside help' (as in a family member who's a doctor--like my brother--or attorney with elder care background, like my cousin), you are still at the mercy of the system. (Doctors, when they make their recommendations, also are factoring in malpractice if it is too conservative--a point not made in these articles.)

Like you, it happened with my parent--my mother. Her decline was accelerated by a necessary stay after a fall in rehab where she became gradually dehydrated and possibly delirious at times--and never a note on the chart, because my brother saw all of them. She had to be readmitted to the hospital two days after coming out of rehab, and because she already had early-stage stroke-related dementia, she lost a lot of ground. It was instrumental in our difficult decision to care for her with a live-in at home for over two years--and if I knew then what I know now, her last three months would have been in hospice care at home.

What distresses me is how little is being done to fix the system to address these needs. Instead the focus is on big-ticket EMRs and HIT, specialized treatment centers, robotics (every hospital within 50 miles has to have it)--high-profile things that are seven-eight figures plus, but sexy and marketable (in hospital terms).

I'll concentrate on just two things:
1) There are only 300 NICHE designated hospitals in North America. NICHE hospitals commit to special training of nurses and staff in geriatric care best practices, including hospital delirium. It's available to hospitals at relatively low cost, but the commitment in staff time, training, revising procedures and even clinical resources (like rooms and units) has to be substantial. Why are there only 300? Hospital attitudes are, 'old people are going to wind up here anyway, and on Medicare, so.....'
2) The 30 day same-cause readmission mambo. Simple telephonic telehealth follow up (live calls where answers are databased and set up for alerts) and post-acute telehealth monitoring of chronic conditions, as part of the discharge plan at any age, can cut the 20-25% readmission rate (heart failure, heart attack and pneumonia) down substantially (I've seen study numbers 20-50%). Outcomes are demonstrably better in improving self-monitoring of care--helping ensure that patients are encouraged to stick to their care plans and see their doctors when needed. Implementing telehealth of these types is much lower in cost--hundreds to low thousands--and can in many cases be small money makers. Yet hospital interest can be summarized thus: 'when Medicare stops paying for readmissions, then we'll get the system in.' (Disclaimer: I am doing marketing consulting for a service company in this market.)

And witness the struggles of telehealth (and telecare) companies to find a paying market--for many reasons. Despite the cheering news of an $8.1 million, three-year study grant by the Helmsley Charitable Trust for telecare in 40 rural Midwest communities (Good Samaritan Society and WellAWARE), sensor based systems by now should have become a 'standard of care' in AL communities--and a reliable home system popularized.

Same conclusion: not acceptable. WAY not acceptable.