Sick To Death > Chapter 5 > MediCaring: From Promises to Practical Program

Sick To Death book cover This extract from the online edition of Sick to Death and Not Going to Take It Anymore! is used with permission.

MediCaring: From Promises to Practical Program

The care system we now have reflects its origins - powerful men who were worried about heart attacks. That is an outrageous oversimplification, of course, but still fundamentally true. A citizen can get 911 services almost anywhere in the country; and surgeries, devices, drugs, and hospitals have had ongoing investment and yield profits. But don't risk finding that you need a home health aide on the weekend or need help opening a jar on the day your arthritis acts up! "We don't do that" is the likely answer. The hopes and fears of elderly ladies living in walk-up apartments and juggling half a dozen medical problems along with small incomes and rising rents are quite different from the issues that built the care system. For all those elderly women (and a fair number of frail old men, too), endurance and constancy count for a lot, as do concrete services in daily life and respect for the human value of home, control, companionship, and meaningfulness. The emergency squad that rescues the heart attack victim on the subway platform, the hospital that gets him to surgery within a few hours, and the pharmaceutical suppliers that help keep this from happening again can reasonably be concerned just with fixing his problem and walking away. The social service agency trying to keep an elderly, mildly memory-impaired, and impoverished lady at home and comfortable does not really have a problem to fix. Instead, it is trying to avert calamity, to ensure safety, and simply to help her keep herself clean, fed, and engaged as long as possible. These services do not attract investment - their funding is usually a welfare or safety-net model of the least expense possible without scandal. The care system the elderly lady needs would have very different priorities and structures. Current care arrangements simply expect her to use the system that other priorities generated.

Figure 7. Overview of the MediCaring strategy.

Eligible very sick people Especially qualified providers Medicare/Medicaid
  • Metastatic or aggressive cancer
  • Stroke with self-care disability
  • Heart failure Class III or IV
  • Emphysema with low resting oxygen
  • Dementia, unable to walk or talk
  • Frailty, older than eighty-five, self-care disability
  • Offer correct treatments
  • Answer urgent calls twenty-four hours a day, seven days a week
  • Plan for worsening complications and death
  • Ensure continuity from diagnosis until death
  • Move most services to the home
  • Ensure the availability of key medications
  • Support family caregivers
  • Guarantee personal care
  • Pays appropriately - probably a base rate for each trajectory, plus reinsurance for costly outliers
  • Encourages only a few providers in an area
  • Publicly monitors quality

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Figure 7. Overview of the MediCaring strategy

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Various clinical service providers around the country are working with a mental model of optimum care, sometimes called MediCaring (a term trademarked by Americans for Better Care of the Dying), which aims for more effective organization of care services (see figure 7). Basically, the core idea is that we could identify a time near the onset of substantial disability and suffering from progressive, eventually fatal chronic illness and, starting then, match the patient to a tailored service array with appropriate funding and regulation. For each of the three major trajectories, eligibility would be set by the onset of a specific serious level of the patient's condition. For example, for persons facing mostly heart failure problems, eligibility might be determined by an inability to climb steps because of shortness of breath and having the heart move less than 30 percent of its volume on each stroke. The actual eligibility criteria mainly need to be replicable and administratively feasible rather than comporting with a predetermined physiological standard. In general, they would reflect the results of the "no surprise" question: people sick enough that it would be no surprise if they died within the coming year. Services would be tailored to ensure continuity, advance care planning, family support, and other important elements.

This approach offers the opportunity to blend the interdisciplinary team, continuity, and symptom relief that underlie the effectiveness of hospice with the self-care education, timely reminders for prevention, and advance care planning of successful chronic illness management. The most sensible funding plan would be based mostly on capitation or on a budget, probably with separate coverage of occasional costly "outliers" like heart transplants. MediCaring is the kind of major rethinking of health-care delivery that offers hope of substantial reform, especially since the providers would have to meet quality standards in order to be eligible for the increased payments. Not only are there a dozen providers trying out this set of ideas, in settings from veterans' home care to hospice, but the Medicare Payment Advisory Commission (2003) has declared that it will examine whether disease management programs might target beneficiaries coming to the end of life. Similar trial programs are included in the legislation that enables Medicare to cover prescription drugs (Medicare Prescription Drug, Improvement, and Modernization Act 2003).

The deficiencies that now plague heart failure care (see chapter 4) might make it an especially appealing case study for early implementation of a MediCaring approach. If Medicare provided enhanced payment for care of persons with advanced heart failure, perhaps as a management fee or a comprehensive payment (like PACE or hospice), then Medicare might also require that providers demonstrate certain performance characteristics in order to qualify for that payment. For example, the provider team might be required to guarantee that an appropriate clinician could be at the home within two hours, day or night; to make plans for exacerbations with essentially all patients; to provide care in hospital and nursing home as well as home care and office visits; and to ensure self-care education and family support. Since heart failure affects many people covered by Medicare and since better care patterns are well proven by research but only rarely available, this might be an area in which reforms could start. Working with heart failure would teach us how to allow programs to reach a sustainable size, how to reinsure for costly outliers, how to curtail routine use of high-cost treatments of dubious value, and how to advocate for sustained reforms.

MediCaring programs for heart failure turn out to be closely linked to similar work for lung failure. Thus, fielding good care arrangements could effectively cover most patients who follow the second trajectory - chronic organ system failure. Traditional hospice programs caring for cancer patients provide the model for the cancer trajectory. That would leave us to struggle with frailty and dementia, the third trajectory. The split in resources between Medicare, Medicaid, and private assets complicates handling the course for these patients and families. Demonstration programs might build upon PACE (see chapter 3), for example, by exploring the possibilities of actuarial pay-outs from private wealth in order to enter a care system that is reliable and comprehensive.

The basic ideas in MediCaring are these:

This proposal is rather different from those that add a layer of useful coordination to the underlying care system, such as disease management; and it is rather different from just paying for usual care at a discounted risk-adjusted rate. Improvements in payment policy should generally linkto high-value care, so that only providers capable of effective and efficient care can sustain their business model. That is what MediCaring aims to do.

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