A capacity consideration in goldilocks care: frailty

by Stephen Evans, MD (geriatrician, New York)*

A dilemma exists in implementing the role of Care Navigator, when that care management role includes translation of medical treatment choices for patients and their families; how is the Navigator to assist patients/families to understand when an intervention is more or less likely to cause overall benefit or harm, especially in the usual situation of multiple simultaneous co-morbidities?

Physicians know (or should know) that, as people age and accumulate disabilities, more aggressive interventions may be as likely to cause harm as benefit.  We call this transitional time in patients one of increasing frailty, in which frailty is defined as vulnerability to adverse clinical outcomes; I wonder if taking frailty into account might make the Care Navigator’s job clearer in the Minimally Disruptive Medicine care model.

Several studies have shown that frailty in either of two constructs (the Hopkins/Fried Phenotype or the Rockwood/FI-CGA) predicts quite powerfully patients’ likely benefit or harm from interventions.  It’s easiest to think of “vitality” or normal adult functioning as one end of a spectrum, with “frailty”, with decreasing functioning at the other end, and the challenge is to assist a patient/family to understand where the individual patient sits on that continuum of vitality-frailty; placing a patient on that spectrum makes it easier to consider the likely benefits/risks of treatment.

Our group uses the FI-CGA, which has a wider mathematical “spread”, allowing more nuanced measurement of a patient’s frailty in this way.  We use the patient’s score to contextualize shared decision-making among patients/families and caregivers.

So, a patient who is “vital” (not frail, such as,  for example, the 95-year-old still playing tennis regularly) has a much better chance of a successful outcome with a hip fracture repair than a frail 75-year-old with a history of stroke with dementia, depression, and physical disability. At the same time, no tool, including the FI-CGA, predicts which patients will do well or poorly at different levels of frailty or vitality, so we try never to say “you should” do one thing or the other. Rather, we outline the choices, the patient’s frailty,  a ballpark sense of what the patient’s status could be with or without the intervention, and then try to help the patient/family determine which treatment choices they prefer given the attendant risks and benefits of treatment or non-treatment of acute or chronic illness.

Studies published recently suggest that frailty measurement may be the best way to assist geriatric patients/families and caregivers to understand their risks and benefits before embarking on treatment; frailty may assist Care Navigators in their management/translational roles as they apply the Minimally Disruptive Medicine care model to these patients in the future.

*Disclosure: Dr. Evans is founder of Videx-US, a company that offers clinical decision support software for elderly patients based on the Rockwood/FI-CGA to place patients in the vitality-frailty continuum.

Minimally Disruptive Medicine comes alive!

by Allison Verdoorn

Designer researcher, Mayo Clinic Center for Innovation

Meet Susan and John.  They are an active retired couple who enjoys traveling and visiting their grandchildren.  John has multiple chronic health conditions including diabetes, high blood pressure and arthritis.  Susan serves as John’s primary care giver and manages his medications and health conditions.  The amount of work they must do to deal with John’s medical conditions is in balance with their capacity to do that work and achieve their larger goals.

In the Minimally Disruptive Medicine care model, John is assigned a Care Navigator, Frank, because of his multiple chronic conditions.  Frank works with Susan and John on a frequent basis both by phone and in person to address any issues John might have either socially or medically.  Frank is especially interested in any goals the couple has like traveling and losing weight and takes care to make sure any care plan is in line with the goals.  Frank has access to a database of social service connections and is a member of John’s health care team so he is able to relay relevant information back and forth from John and Susan to John’s care team.

John suffers a stroke that hospitalizes him.

In the traditional medical model, John is seen by multiple specialists, each with different plans of care, diets and medications.  Often these visits take place when Susan is not able to be present and the couple is left to reconcile all of the information they were given when John is released from the hospital.  While his capacity has been reduce by illness his workload has increased with new diets, medications and plans.

In the Minimally Disruptive Medicine model John is cared for by a care team that includes physicians, dietitians, pharmacists, social workers, nurses, a care manager and care navigator.  This care team consults carefully with specialists to ensure that a cohesive plan of care that aligns with John’s goals and work capacity balance is developed.

A care manager, Lucy, works with Frank, the care navigator, to ensure that the clinical goals of the care team work with and not against John and Susan’s goals and desires.  The care manager serves as a counterpart to the care navigator as a liaison to the clinical team.

John is released from the hospital.

In the traditional medical model, John is sent home with a confusing dismissal summary, multiple new medications, conflicting diet plans, and two different rehab programs.  John and Susan are unsure who to contact for follow up questions and instead try to make due as best they can with the information they have.  Both John and Susan’s work to care for John has been increased while John’s capacity has been greatly reduced due to his illness.

In the Minimally Disruptive Medicine model John and Susan leave the hospital with a care plan that was discussed with them before leaving.  The care plan is sensitive to the goals John and Susan are striving towards and includes contact information for their care team.  John and Susan can call Frank with questions and concerns and Frank provides them not only with clarification but also community resource connections.  Frank reports information directly to Lucy who is able to relay updates to the care team on a regular basis.  Frank pays special attention to the couple’s work capacity balance.

In the traditional medical model, John’s health continues to decline and the stress of the situation and caring for her spouse begins to affect Susan’s health.  The work she must do for John is a huge burden for her.

Susan feels she is becoming depressed and is no longer able to function at the level she had before the hospitalization.  Because of this Susan’s capacity to do the increased work is reduced.

As Susan falls into a depression her ability to care for John is reduced and John’s health declines further.

With few resources, John and Susan continue to manage their declining health on their own.

In the Minimally Disruptive Medicine care model the care team continues to meet regularly even after John’s release from the hospital.

Physicians, nurses, care managers, care navigators, pharmacists, social workers and dietitians work together to make sure the plan of care that is developed reduces the amount of work the couple must do and increases their capacity to do it.

When specialty consults are necessary, the team reaches out to the relevant specialist and then brings the recommendations back to the larger group to ensure they are inline with the larger plan.

The team utilizes a dashboard to allow for an accurate understanding of the John and Susan’s work and capacity levels.

In the traditional medical model, John’s capacity continues to decline as his conditions are not well managed.  Additionally his work has not been reduce and has in fact increase now that Susan is struggling with problems of her own.

The traditional medical model has placed John and Susan in a seemingly never ending loop that continues to add work to their lives while providing no additional capacity.  John will struggle to improve over time and will likely continue to have expensive hospitalizations.

In the Minimally Disruptive care model John and Susan’s work and capacity balance is carefully monitored by their care team.

The care team develops care plans that help the couple

Independence at Home Organizations as implementors of Goldilocks care?

The New York Times offers an OpEd written by Jack Resnick, a NYC solo internist. In this article, Dr, Resnick discusses delivering care at home and highlights the health and economic opportunities afforded by this practice, particularly among the elderly and highly disabled. Of course, these patient groups are often complex and have multiple comorbidities.

The opportunity afforded clinicians who assess patients at home is that of a highly detailed understanding of the context in which caregiving (including self-care) is taking place and on the ways care is being implemented.

A colleague working a few years back in the Peruvian jungle noted that pill blisters were accumulating around a religious icon sitting on a shelf. The patient felt that this was the way in which these medicines would be most conducive to improved her health.

Clinicians accessing patients at home also reduce access barriers to care and can make care delivery fit the context of these patients and their caregivers. By clinicians I mean not only physicians but also nurses, pharmacists, social workers, dietitians, coaches, and other healthcare workers.

As consultants and sales people know, travelling to make sure you have enough face-to-face contact is important to develop relationships and make fruitful connection. Chronic care delivery clinicians know the same thing. As both are finding out, tools to achieve that connection cannot replace the power of the personal visit, but certainly supplement it. To make models of home care affordable will require a combination of in-person and technology enabled contacts, with the former always administered in sufficient dose before shifting to the latter.

Healthcare reform in the US has provisions to support Independence at Home Organizations. Very little research into technologies to support home care delivery and in ways to support and enable the informal care network that is home-based exists. It would be critical when developing rules for these organizations that the burden they may impose on patients and caregivers be kept to a minimum by design, that they connect with communities to improve patient and caregiver capacity, and that they proceed efficiently in a patient-centered fashion.

That this connects with Minimally Disruptive Medicine is hinted by Dr. Resnick himself, the author of the OpEd.  He states:

For too long the institutions that make up our health care system — hospitals, insurers and drug companies — have told us that “more is better”: more medicines, more specialists, more tests. To rein in spending and deliver better care, we must recognize that the primary mission of many an institution is its own survival and growth. We can’t rely on institutions to shrink themselves. We need to give that job to patients and their doctors, and move health care into the home, where it is safer and more effective.

Perhaps too much to ask of a single solution set, but perhaps not. For those who are home bound and for those for whom the current system fails them by overwhelming them, home delivered care may represent one more tool to deliver care that fits.

Administrative disruption as a component of treatment burden and as opportunity for minimally disruptive medicine

I had a patient who told me that she was not experiencing any significant burden of treatment from caring for her type 1 diabetes.  A minutes later she went on to tell of a tragicomic experience trying to get an Omnipod insulin pump: calls to diabetes clinician, educator, insurance company, Omnipod rep, plus their administrative assistants, voicemails, faxed forms requests, etc.  This story made me think of this brilliant video by The Altons:

This video of Air Healthcare is based on an article by Jonathan Rauch in The National Journal Magazine here.

Clinicians need to be aware of what happens in their own front offices, back offices, and the administrative challenges patients face with access to them, their medicines, devices, and other components of their care.  These disruptions may lead to poor treatment fidelity and outcomes.  A minimally disruptive medicine approach would apply lean methods from a patient centered perspective to correct this situation.  Thoughts?