The thing that worries me most about the long term health system outlook

Economic growth in the second quarter was up over expectations, health care inflation remained historically low, and the ACA was rolled out in a reasonably successful manner (remember in December when people were saying no one would sign up, or the uninsured rate would go up?, or whatever doom & gloom was the flavor of the day). I am a charter member of “The ACA was a good step but we need many more to have a sustainable health care system” and there are tons of uncertainties in forecasting long run health care cost growth, overlaid with difficulties in forecasting econcomic growth. But, the passage and implementation of the ACA has put the entire health system in play and I am optimistic that we will muddle through reasonably, helped by a political deal at some point relatively soon.

However, the thing that really worries me about the future of our health care system and country, is long term care.

Even if we manage to continue on the path of lower than average per capita cost growth in the Medicare program, the transition of the baby boomers into retirement still means more workers (adult children) caring for their parents (Medicare beneficiaries) with fewer siblings to help. This is esssentially the demographic definition of the baby boom. Long Term Care (LTC)-which you could define as help and support to enable someone to live with a disability-is easily the most important public policy issue about which we are not discussing.

The experience of my family in caring for my mother-in-law who suffers from a rare form of dementia has been exceedingly difficult.

  • Several years of very close supervision across town, hours spent navigating physicians and health care use, dealing with her financial affairs for the past decade.
  • Her moving into our house (me + my wife and  3 teenagers) for around 6 months, and finally moving to an assisted living facility after 3 hospitalizations related to falls and wandering (hallmarks of dementia) in less than 6 weeks.
  • Navigating the issues related to assisted living placement and monitoring (she is in her second facility, after being thrown out of the first)

There are many types of burdens:

  • Physical in the form of picking my mother in law off the floor when she fell;
  • Missed work and lack of being able to focus at work due to worry;
  • Emotional strain in many forms, especially for my wife who struggled with anger and depression as we tried to do what was best.
  • The hardest thing overall was the uncertainty about what to do to care for her. I am supposed to be an expert in LTC and palliative care, and we were constantly unsure if we were doing the correct thing. Our marriage was actually strengthened by our escalating caregiving responsibilities over the past few years, but it is easy to imagine it having the opposite effect on a marriage.
  • Financial. We have been spared much of this burden because my mother in law has an expansive private LTC insurance policy. Great for her and us, but not a population wide solution.

The ACA of course contained the CLASS provisions that were an attempt to set up a private LTC insurance market to cover low level LTC costs, and these provisions were repealed from the ACA as part of the fiscal cliff deal. I think CLASS as passed was unworkable, and think that Sec Sebelius was correct to say that it should not move ahead in October, 2011. However, one of the worst outcomes of the acrimonious debate about CLASS was to turn the discussion of LTC into nothing more that a deficit accounting debate. Let me assure that it is much more than that, and that our country needs to talk about how we should deal with LTC in a much more forthright manner.

This link has many posts on LTC if you want to read more.

About Don Taylor
Professor of Public Policy (with appointments in Business, Nursing, Community and Family Medicine, and the Duke Clinical Research Institute), and Chair of the Academic Council at Duke University . I am one of the founding faculty of the Margolis Center for Health Policy. My research focuses on improving care for persons who are dying, and I am co-PI of a CMMI award in Community Based Palliative Care. I teach both undergrads and grad students at Duke. On twitter @donaldhtaylorjr

2 Responses to The thing that worries me most about the long term health system outlook

  1. Bob Hertz says:

    I believe that Germany expanded its Medicare system about 10 years ago with an extra tax for long term care benefits.

    Of course this would require a grown up approach to budgeting, which is sorely lacking in our system right now.

    The preference in America seems to be that instead of a small amount being assessed to each taxpayer, instead we should let all the costs fall onto a few silent unlucky victims. Some of the propective victims buy insurance, most do not.

    That is the stark difference between social insurance and the free market.

  2. Charles Beauchamp MD, PhD says:

    The lack of a 24 x 7 System (with a capital S) of cost-effective outpatient health care with evidence-based supervision if not actual care by PHYSICIANS for ALL citizens remains a pipe dream in the USA. Care by hospital systems (with a little s) such as the Duke sponsored system of care is very cost-ineffective (due to application of facility codes in pricing policies) and very non-responsive to the 24 x 7 care needs of the elderly such as initial wound care after falls that do not have an associated fracture. The same could be said of 24 x 7 care of congestive heart failure, altered mental status episodes, pre-syncopal events involving potential postural hypotension based causes, recurrent neurological & cardiac “attacks” that have a small blood vessel (microvascular) etiology, acute febrile episodes beginning on the “wrong day” or “wrong time”, ongoing wound care complications, acute severe gastroenteritis episodes, diabetes severe peripheral neuropathy pain problems that bestir in the middle of the night, polypharmacy that can cause severe neuropsychological and other side effects through drug-drug and drug-problem interactions, in part because the doctors in our systems of very poorly coordinated care do not know or even really care what each other are doing to the elderly….,,,, result in very long waits at phones hoping that someone in the health care system (with a very very small s) will call back with a plan for urgent care for an elderly relative by someone who knows what to do outside an ER or urgent care facility and NOT within a minute clinic rendering minutia care staffed by non-physicians.

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