Mar 242020
 
Dr. Joanne Lynn Portrait. Photo credit Politico (used with permission)
Dr. Joanne Lynn

By Joanne Lynn

Within the next few weeks, the U.S. will experience a very large number of deaths from Covid-19. The evidence is now plain that these will mostly be persons over 60 years old, and many will be persons past 80 and persons already living with disabilities and illnesses associated with aging. Every one of us in that group should be making decisions about the desirability of hospitalization and ventilator support, yet no one is talking about making Covid-19 advance care plans. If a person chooses to turn down the hospital setting or the ICU care, whether for spiritual, pragmatic, or altruistic reasons, that person needs to be confident that symptom management for air hunger will be available. And our funeral homes, crematoria, and cemeteries need to be ready. Furthermore, separate from all those issues, the nation needs to be developing serologic testing for immunity, so we can tell who is immune and therefore able to return to work and visiting without the risk of infection from or spread of this virus.

Why are we not thinking ahead and preparing for these issues? This is the same problem we had in January, when it was already clear that this virus was so contagious that it would circle the globe. We are already way behind in dealing with today’s issues. Rather than being in the same position on near-future issues, we could deliberately get out ahead on these.

Every nursing home and assisted living facility should immediately move to get advance care plans for nearly all of their residents. These plans should be specific to the threat of Covid-19 in the context of the particular resident’s situation. Covid-19 in elderly and seriously ill persons mostly kills by respiratory failure, progressing over a few hours or days from a sensation of breathlessness to air hunger and suffocation. Only a minority of elderly persons who are put on ventilators survive to leave the hospital, and most have lost more functional ability from the deconditioning and struggle. Elders already living with eventually fatal illnesses and their families might make decisions to avoid all this and accept that a serious case of Covid-19 is very likely the end of their lives.

But someone has to ask them. Someone has to inform the elderly person or his or her surrogate decisionmakers and help them to understand their situation, and then to document their decisions, especially if they decide to go against the conventional pattern of going to the hospital or using a ventilator. These discussions are difficult, and the clinicians involved may find VitalTalk.com to be helpful. Families might resort to TheConversationProject.org to find the language needed. Leaders on television need to be encouraging these discussions and decisions.

Nursing home and assisted living residents are at particular risk because we really have no way to prevent outbreaks in facilities. This virus has about a 6-day incubation period in which the infected person has no symptoms but is already capable of spreading the virus. Someone is bound to bring the virus into some facilities unknowingly. With so many residents who cannot cooperate fully with isolation due to dementia or delirium, the virus is very likely to spread. So, a focus on advance care planning for residents of nursing homes and assisted living centers is urgent and is also able to be implemented. Still, half of our population of seriously ill or disabled elderly people are not in facilities; they are being cared for at home by family. So, families need to have the same conversations and make these decisions.

One painful aspect of these discussions is that hospitalization and ventilator use may become unavailable to these elderly or ill persons if our facilities become overwhelmed. We don’t need to dwell on this aspect, of course, but we do need to acknowledge that a decision to pursue fully aggressive medical treatment depends upon those elements continuing to be available.

In addition, a person whose care plan is to stay on site and not to use the hospital, or who has no option to get hospitalization, needs to be able to rely upon good symptom management for respiratory distress. This requires supplementing oxygen and providing morphine (or another opioid). Many nursing homes and assisted living centers will have had little experience with supporting people dying with respiratory failure as the cause. Hospice and palliative care practitioners will have the needed experience of titrating medication to relieve air hunger while leaving the possibilities open that the person might survive, but they need morphine and personal protective equipment. Even so, they will be stretched to serve suddenly large numbers of infectious people dying of respiratory failure at home and in facilities. These clinicians need to be in the list of high priority providers and their services need to be acknowledged and valued by leadership.

Morticians, funeral directors, crematoria, and cemeteries will need to be prepared for a surge of deaths, including many out of the hospital. Again, leaders should acknowledge and value these services and help to make arrangements for their workforce and supplies.

Finally, we will soon have a substantial number of people who have had their Covid-19 infection and recovered. Nearly all will have rid themselves of the virus within a month. But most will be uncertain as to whether they are immune because they never had a definitive diagnostic test, either because their illness was mild or because the testing was unavailable. Persons who are immune become very valuable to the public. They can return to work, they can visit sick people, they can provide care – indeed, they can be the vanguard of a return toward normal. But they need to know that they are immune, as do their employers, patients, and family members. This calls for development of and deployment of serologic testing, so we can know who is still susceptible and who is immune. We don’t yet know how long immunity will last, and the evidence in related viruses is for it waning over a year or two. But in the current year, these people are especially valuable since they cannot be infected and cannot spread the virus (with ordinary hygiene). We need leaders to be calling for development of this testing and making plans for deploying it – perhaps first to health care workers.

The nation is watching the experience in Italy with some horror – but it is over there and not here. We are not actually dealing with the likelihood that some aspects of their experience will be here, in at least some parts of the nation, in the next months. Let’s get over our reticence. We will have a great many deaths. Many will be in nursing homes and assisted living centers and most will be among people who are growing old. When a person is likely to die if he or she gets this disease, we should at least be clear as to what treatment the person wants. If the person is dying without ventilator support, he or she should have treatment to prevent feeling suffocation. Bodies should be able to be removed and buried or cremated promptly. And we should be ready to test for immunity within the next month.

These things are foreseeable. It’s time for leaders to talk and to put plans in place. Let’s get ahead of this pandemic on these issues.

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Mar 282018
 

By Les Morgan

The following reports were produced as deliverables for our project “Aggregating Care Plans to Manage Supportive Care Services for Elders” (Joanne Lynn, M.D., Principal Investigator).This project is funded by the Gordon and Betty Moore Foundation through Grant GBMF5662 to Altarum Institute. Dr. Lynn will provide a more detailed report on the project as a whole in a following blog post.

We are releasing these reports now particularly to help some of the community groups we are working with on data projects. The first three reports cover technical details of how care plans can be structured, stored, and shared in electronic information systems. Those three reports taken together provide useful information that can be used by community groups seeking insight into eldercare through the use of data aggregation methods.

Communities that are seeking to improve eldercare need trustworthy data to use in setting priorities and in monitoring improvements. One appealing approach is to aggregate existing health-related records and analyze the data for key indicators of how their local system is functioning. However, for most of the communities we have worked with, on a practical level the aggregation of this sort of data seems to be very difficult or impossible, given important concerns over privacy and the serious penalties associated with breaches of privacy obligations. Our hope is that these reports will help overcome some of the obstacles that stand in the way of improving care for some of our most vulnerable citizens.

To read the full reports in PDF format, click on the report name you wish to view.

Report 1

Interim Report on the Variety and Merits of Care Plan Templates and Regulations in Use, Including Implications for Information Technology [PDF]

Joanne Lynn and Les Morgan. October 20, 2017

Effective multidisciplinary clinical teams know their patients but document only a skeletal summary of the case. That summary generally includes diagnoses, basics of the living situation, medications, treatments, and supportive services in use or recommended. The various biases, omissions, and lack of long-term perspectives in the clinical documentation are substantial, as summarized in the report.

Our scan of forms and data formats for care plan documentation shows a wide variety of approaches. All made heavy use of free-text narrative elements. The most complete and up-to-date set of care plan records that we have seen was done longhand on a typewritten sheet by a single care coordinator responsible for over one hundred high-need patients seen at one hospital.

The electronic record systems that we reviewed used only to carry the minimal information needed for a C-CDA transmission mostly limited to immediate and near-term needs. None of the electronic records we examined were being used to record the caregivers with their roles, the prognosis, or an advance directive. None used the existing FHIR data format standards for complete care plans.

Report 2

Interim Report Summarizing Data Aggregation Methods in Use To Date and Their Strengths and Weaknesses [PDF]

Les Morgan. October 20, 2017

This is a high-level Information Technology (IT) architectural review discussing major variations in system design approaches for care plan data aggregation, based on a content analysis of interviews with vendors and some key users. A series of architectural diagrams is included to classify approaches. Our interviews with technology vendors are ongoing, and this preliminary summary of methods will evolve as we see more examples of working systems.

Report 3

Aggregating Patient-Level Data: Regulatory, Ethical, and Privacy Issues for Communities [PDF]

Les Morgan and Joanne Lynn. March 2018

This report gives an overview and assessment of regulatory, ethical, and privacy issues specifically related to the use of aggregated care plan and related health data for analytical use across defined geographical catchment areas. The literature covering regulation and privacy of healthcare data is extensive and often contentious. Our review here highlights some major sources for authoritative guidance, then moves on to the specific situation of using aggregated and de-identified data sets for geographic analysis. Regulations that are specific to requirements for maintaining care plans were covered in our prior project report (Interim Report on the Variety and Merits of Care Plan Templates and Regulations in Use, Including Implications for Information Technology) and are not repeated in this report.

A key conclusion of our review is that using aggregated and de-identified data on a broad geographic basis is probably not restricted as much as many of our community stakeholders and leaders think. Some uses of such data are specifically exempted from key privacy laws when appropriate protections are in place. Some regional health care payer systems and Health Information Exchanges (HIEs) have mechanisms to enable such research now, using very large data sets they have already compiled. This means that it is feasible to carry out pilot projects to demonstrate practical methods for data aggregation and analysis for a community or region in many parts of the United States.

Report 4

Benchmarking the Eldercare Workforce: A Community Focus [PDF]

Meghan Hendricksen and Joanne Lynn. February 2018

The overall purpose of this report is to provide an initial, alpha-version, benchmark of the workforce within geographic communities to use for illuminating comparisons with their own workforce estimates.

This baseline benchmark will provide a tool for consideration, and then feedback for improving the tool. In essence, we are creating the start of a learning system for optimizing the workforce in a geographic community. Once the estimates and ranges become substantiated in multiple communities and improvement activities, the maturing benchmarks will provide a trustworthy source of guidance for communities, where evidence is currently lacking, on what the priority needs are for the workforce that is serving older adults living in the community and also will provide a tool for monitoring improvements. Measuring the local workforce capacity also helps engaged community leaders to envision their whole system and its products, even though that “system” is owned and operated by many different entities that are not necessarily coordinated.

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Dec 122017
 
Anne Montgomery portrait
Anne Montgomery

By Anne Montgomery [as posted on the American Society on Aging (ASA) website]

As evidence accumulates on how community-based organizations (CBO) can cost effectively meet the medical and long-term care needs of older adults through supportive services, the importance of linking multiple data streams across settings becomes clear. But until recently, policy barriers hampered effective collaboration and communication between the healthcare sector and CBOs.

Read the full 12/11/2017 post at the American Society on Aging (ASA) website:

http://www.asaging.org/blog/enhancing-collaboration-and-communication-between-medical-and-community-settings

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Mar 012017
 
Portrait of Dr. Joanne Lynn
Joanne Lynn, MD

By Joanne Lynn

Most of us now reading this will get the extraordinary privilege of being able to live into old age. For nearly all of human history, few people lived to be old, and even fewer lived long with serious disabilities. Now, most of us will have a substantial period of increasing disability at the end of long lives. The experience of people with serious illnesses and disabilities in old age (“frail elders”) and the experience of caregiving for an elderly person are profoundly shaped by the availability of supportive resources and appropriate medical care in the local community.

For example, some communities have ready availability of services such as home-delivered meals and wheelchair-adapted housing, while others have exceedingly long waiting lists for often-inadequate services. Some communities have developed substantial geriatric medical care, including house calls and telemedicine, while others rely on the hospital for every complication. Little is known about the experiences of elders and their caregivers in the usual community, since very little is captured about the community’s experience of this part of life in conventional surveys and reports. Many health systems and communities like to take on the responsibility of monitoring and improving the care system for disabled elders and their caregivers, rather than just offering rescue services for serious and often preventable complications; but they find that the reliable metrics needed to guide improvement are unavailable.

We’ve given some thought to potential ways to meet these needs, and here’s what seems possible and affordable in order to make a measurement dashboard to guide improving a community’s eldercare system. First, one could mine large existing databases, such as Medicare and Medicaid claims, Outcome and Assessment Information Set (OASIS) home health agency assessments, and Minimum Data Set (MDS) nursing home assessments. Then, one could monitor demand for and performance of key service providers, such as wait lists for home-delivered meals or availability of wheelchair-adapted housing. Third, the community could interview family and caregivers for a sample of elderly decedents and describe the experience of the last couple of years. This strategy would sample those who received few services and demanded little, and it would allow exploration of critical issues such as bankrupting elders and families and providing culturally appropriate services.

Our last data source, learning by aggregating care plans, is a bit beyond current implementation, but it could enable the opportunity for substantial monitoring and improvement efforts. We envision having records with the key elements of service needs for nearly all frail and disabled elders in a geographic area. Being able to combine them electronically would yield rich data in order to summarize needs, services provided, gaps, oversupply, and quality problems—both for the whole community and by mapping to clarify the locus of some issues. If, for example, the community has 500 elderly people so disabled that they should have medical care at home, and the community had current capacity only for 100, then one could identify and map the areas of need and examine the current and potential supply options to address the gaps. Furthermore, with data on demand and supply for a dozen important service needs, the community would be able to set priorities for investments in public resources. You can read more about how this kind of community management would work in our book.

Of course this work requires adequate care plans, preferably in a format that allows electronic identification of the plan and its elements. At present, too few elders living with advanced illnesses have reasonably comprehensive care plans created, and even fewer have them written down, even in narrative form. We’ve also realized that shortages of, or quality shortcomings with, important services are addressed explicitly or noted in the record. Thus, a person who really would do better with door-to-door wheelchair transportation and lives in a community lacking this service will instead have the substitute arrangements in his care plan, such as “transportation relies on the availability of his son-in-law Tom, so appointments need to revolve around Tom’s availability.” The shortage of appropriate transportation options might be inferred but is not likely to be explicitly stated. Similarly, the lack of respite for a caregiver will not be noted. Therefore, additional work is needed to develop comprehensive care planning, which includes collaboration with the regulatory and technical bodies that are working on the standards for care planning.

With funding from the Gordon and Betty Moore Foundation, we are working to develop the methodology to do care plan aggregation. We are actively seeking communities that would like to help us develop these methods by letting us try it out with their population. We want to know what information from care plans you think would be most relevant and how you’d want to act on that knowledge, what entity in your community might be able and willing to act, and whether it is worthwhile to push for better and more standardized care plans.

Please email us at [email protected] if you know of or belong to an organization that might be able to work with us.

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Jun 202016
 

MediCaring Communities: Getting What We Want and Need in Frail Old Age at an Affordable Cost
Published June, 2016
194 pages, 6″ x 9″ (15.24 x 22.86 cm)

ISBN-10: 1481266918

List Price $9.95 at Amazon.com

Americans want a long life and most of us will get to live into our 80’s and beyond, but we have not squarely faced the challenges of living well in the last years of long lives. This book lays out a thoroughly pragmatic way to organize service delivery and financing so that Americans could count on living comfortably and meaningfully through the period of disability and illness that most will experience in the last years of life – all at a cost that families and taxpayers can sustain. MediCaring Communities offers to customize care around the priorities of elders and their families and to manage the local care system so it is reliable and efficient.

MediCaring Communities book cover

MediCaring Communities book (click cover to view on Amazon.com)

Three out of four of us will need long-term care. The period of needing someone’s help every day now lasts more than two years, on average. Most of us will not have saved enough to get through this part of life without financial help from family or government – indeed, we’ll spend almost half of our total lifetime healthcare expenditures in this last part of life, mostly on personal care that is not covered by Medicare. We have not yet required housing to be modified for living with disabilities or secured a ready supply of home-delivered food, and we certainly have not required medical care to focus on the patient and family priorities in order to enable the last years to be meaningful and comfortable. Family caregiving will be a crisis as families become smaller, more dispersed, older, and facing inadequate retirement income for the younger generation.

MediCaring Communities improve care by building care plans around the health needs and living situation of the elderly person and family, and especially from respecting their choices about priorities. The improvements in service delivery arise from integrating supportive services at home with customized medical care and installing local monitoring and management. The improvements in finance arise from harvesting savings from the current overuse of medical tests and treatments in this part of life. These come together in MediCaring Communities.

Strong evidence supports each component, but the real strength is in the combination, where savings support critical community-based services, communities build the necessary environment, and elders and their families craft their course with the help of interdisciplinary teams. This book lays it out, using expansion of PACE (The Program of All-Inclusive Care of the Elderly) as the test case. The book provides a strong and complete guide to serious reform, and just in time for the aging of the Boomers which will escalate the needs dramatically during the 2030’s. Now is the time to act.

You can read extracts online.

Advance Praise for MediCaring Communities

“For decades, Joanne Lynn’s has been the clearest, strongest, most soulful voice in America for modernizing the ways in which we care for frail elders. This essential book is her masterpiece. It offers a magisterial, evidence-based vision of that new care, and an entirely plausible pathway for reaching it. Facing a tsunami of aging, our nation simply cannot afford to ignore this counsel.”
—Donald M. Berwick, MD, President Emeritus and Senior Fellow, Institute for Healthcare Improvement, and former Administrator, Centers for Medicare & Medicaid Services.

“MediCaring Communities integrates good geriatrics and long-term services and supports, and building upon an expanded PACE program can be a tangible start. We should try this!”
—Jennie Chin Hansen, Lead in Developing PACE; Past President, AARP; and Past CEO of On Lok Senior Health Services and the American Geriatrics Society.

About Joanne Lynn

Joanne Lynn, MD, MA (Philosophy and Social Policy), MS (Quantitative Clinical Sciences), is Director of Altarum Institute’s Center for Elder Care and Advanced Illness. Dr. Lynn has served thousands of persons in their last years of life in home care, office practice, hospice care, and nursing homes. She was one of the first hospice physicians in the United States. Dr. Lynn has been a tenured professor at Dartmouth and George Washington University, a quality measurement expert on the staff at the Centers for Medicare & Medicaid Services, the Bureau Chief for Cancer and Chronic Disease in the public health office for Washington (DC), a senior researcher at RAND, and on the Institute for Healthcare Improvement’s quality improvement faculty. She is a member of the National Academy of Medicine, a Master of the American College of Physicians, a Fellow of the Hastings Institute and the American Geriatrics Society, and an author of more than 280 peer-reviewed publications, 80 books and chapters, and a dozen amicus briefs and publications for public commissions.

The reader can learn more about our work and give us advice and insights at MediCaring.org.

About Altarum Institute

Altarum Institute (Altarum.org) is a nonprofit research and consulting organization based in Ann Arbor, Michigan. Altarum integrates independent research and client-centered consulting to create comprehensive, systems-based solutions that improve health. One focus has been addressing the challenges of living with advanced illnesses and disabilities in old age through the Center for Elder Care and Advanced Illness. The dozen staff at the Center aim to help the United States achieve social arrangements that ensure that, when we must live with serious chronic illnesses associated with advancing age, we can count on living meaningfully and comfortably, at a sustainable cost to our families and society.

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Feb 252015
 

By Joanne Lynn

In late January, Department of Health and Human Services Secretary Sylvia Matthews Burwell announced that Medicare would purchase most services on the basis of value rather than volume, aiming for 90% of fee-for-service payments by 2018 [http://www.hhs.gov/blog/2015/01/26/progress-towards-better-care-smarter-spending-healthier-people.html]. Of course, paying on the basis of value is much better than paying on the basis of volume. But a moment’s reflection shows that this strategy requires figuring out what people value. For a child with a broken arm or a middle-aged woman with a gall-bladder attack, desirable outcomes are obvious, widely agreed upon, and readily measured. But this is just not the case for frail elders.

Consider a new heart attack affecting a 94-year-old living with multiple chronic conditions, self-care disability, and a lifetime of experiences and relationships. Different 94-year-olds will value very different things when it comes to treatment characteristics and quality-of-life goals; for example, some will desperately want not to go to the hospital, even if doing so would likely extend their lives, and others will welcome hospitalization with intensive care and every opportunity to get back to the way things were.

Even well-established quality metrics that are important to elder care, including avoiding delirium or the degree to which the person’s symptoms are addressed, are not yet used by Medicare, and the program has done little to develop ways to identify excellent care for frail elders. Rates of certain calamities and medical errors are currently measured, but elderly persons and their families expect that more will be monitored than mere safety. When we are old and frail and facing death, we need the quality of our care to be measured by whether it offers an opportunity to attend to important relationships, live comfortably, and pursue what matters most to each of us. Generic measures that reflect what someone else values won’t suffice.

Consider first what Medicare has set up as measures for this population. A starkly disturbing insight arises in the list of measures under consideration for implementing the Improving Medicare Post‐Acute Care Transformation (IMPACT) Act that are meant to measure outcomes and quality in after-hospital care. [List of Ad Hoc Measures under Consideration for the Improving Medicare Post‐Acute Care Transformation (IMPACT) Act of 2014, http://www.qualityforum.org/WorkArea/linkit.aspx?LinkIdentifier=id&ItemID=78784.] Given the short timeline, the Centers for Medicare and Medicaid Services (CMS) has proposed measures that have already been approved or that are in the process of approval. CMS proposes four measures, each applied in four care settings: the rate of pressure ulcers, the rate of falls with injury, the existence of functional assessment and whether there is a care plan with a goal that involves function, and readmissions.

But in setting out to talk with frail, elderly people leaving the hospital for a short-term stay in a nursing home before they go home, what do we imagine are their highest priorities? The four that Medicare proposes might make the list, except that the way we measure readmissions is seriously deficient, even with risk adjustment [ https://medicaring.org/2014/12/16/protecting-hospitals/; https://medicaring.org/2014/12/08/lynn-evidence/ ]. But most people have other priorities that are equally or more important, such as whether there is a workable plan to get the daily care and support needed (e.g., housing modifications, food, transportation, and personal care). Another question elders often ask is what the effects of their disabilities on the family will be, especially if family members have to provide more care. Elders may also want to be sure that they will have the symptom (pain) control, spiritual support, and reliable supportive care that they will need as their conditions get worse, whether they are in a care system that will maximally preserve their financial assets so that they have a lower risk of running out, and whether they will have to move to a nursing home. Medicare’s metrics don’t yet even try to address these concerns.

Even more troubling is the fact that Medicare does not yet have any methods to judge the match between the services given and the patient’s perspective as to what matters. Current metrics are all grounded in professional standards, and professionals have been slow to build standards that truly take into account the very different things that individuals want in late life. A high-quality service delivery system must try to match the priority needs and preferences of each elder.

As Medicare moves toward paying its providers on the basis of value, it is important to keep in mind what you value is often not what I value, and this difference becomes more pronounced as we have to live with physical and financial limitations and the increasing proximity of death. Here are some steps that we can take:

  • We should demand that Medicare invest in developing measures that matter for the frail phase of life before distorting the delivery system with incentives applying to everyone (e.g., to avoid pressure ulcers, falls, and readmissions) and to have and achieve goals concerning function.
  • CMS should be willing to be the “measures steward” or should fund another entity to do so, since the money available for frail elder care does not spin off strong organizations that can do the developmental work and then maintain updated measures.
  • Our health information systems (e.g., in Meaningful Use Stage 3) should at least start making room in medical records to document each patient’s priorities and the care plan that is supposed to reflect those priorities.

Buying on value is the right idea, but buying value for each elder requires knowing what each one values.

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Dec 222014
 

By Elizabeth Rolf

Take a look at the Swedish national dashboard for eldercare. It’s a great model. An analytics approach that works, Senior Alert (http://plus.lj.se/senioralert) takes the preventive care of every individual patient and inputs the data outcomes in a quality dashboard for each municipality, accessible to doctors, patients, and the public. The civic leader or ordinary citizen can see how their municipality is doing in reducing pressure ulcers or antipsychotic use, and how many patients who need a preventive intervention have had it done. An interactive data system like this is an aspiration for many in the United States, but in Sweden, it is a wonderful reality. Earlier this month, Goran Hendriks, Susanne Lundblad, and Dennis Nordvall presented Sweden’s action plan to an audience in a webinar, which is available online. Many were able to see the results that this remarkable, comprehensive dashboard provides to guide improvement in preventive care by tracking data concerning the risks of falls, pressure ulcers, malnutrition, poor oral health, and incontinence. The information gained in a systematic way is often useful to understand how to treat the problem areas for each elderly patient as an individual, but the exciting application is the guidance it provides for shaping the care system for the entire elderly population of a particular municipality or country.

Lilly, age 95, provides the example used to demonstrate Senior Alert. Her story centers on declining health, increasing disability, and need of reliable care process. The registry that monitors her condition and services helps ensure comprehensive care. By registering Lilly for Senior Alert, her doctor, her family and she are assured that she will have a risk assessment by a team of professionals who will recommend and implement preventive interventions, evaluate these interventions and adjust accordingly.

The data system combines Lilly’s data with all from her geo-political area and provides up-to-date and interactive information as to the progress of each municipality and county with regard to excellent preventive service for fragile elderly persons.

Senior Alert was implemented in 2010, and in the last four years, all 21 counties in Sweden use the program and 288 of 290 municipalities are involved as well. In addition to public programs, 129 private health care providers use Senior Alert. In this time, patients are receiving personalized care plans, along with fewer risks to the patients because of the attention to the needs of each patient. As the process is followed, both the patient and the doctor can see improved results, and these results can be viewed publically online. The data collected can be used to track prevention progress daily for individual patients in many different categories, but collectively creating a reliable care process for Sweden’s entire elderly population. All results keep the patient confidential of course, but the public can access results of various actions.

Want to know more?

Link to Senior Alert: http://plus.lj.se/senioralert

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May 272014
 

Posted on behalf of Dr. Joanne Lynn
Patients and policy makers must require that clinicians communicate effectively with patients and families, not only to plan for death but also to develop a care plan that guides healthcare services through to end of life. Discussing clinical circumstances and their probable course, understanding the patient’s goals and priorities, and considering strategies to achieve them are essential.

Clinicians now work in such limited roles (only in the hospital or in the skilled nursing facility) that many are unaware of what the patient faces over time; teamwork across settings and computerized decision support are urgently needed. Some software programs offer customized treatment plan advice that can be shared between clinicians, patients and caregivers.

A good care plan must address expected situations requiring rapid decision making, such as appropriate response to cardiac arrest and death, and must deal with problematic treatment issues, such as hospitalization or artificial feeding. But care plans are not just for medical treatments: they honor personally meaningful relationships and activities, trade-offs between medical treatment and life enjoyment, and availability and skills of family and other caregivers.The care plan must move with the patient across settings and time, be revised as situations change and at planned intervals, and be evaluated for achievement of goals. Evaluations should go to clinicians involved in the plan, so their work can improve.

Ongoing communication between a well-informed physician and the patient about the situation, the family’s values, treatment preferences and care goals is crucial to a care plan. Yet many physicians are reluctant to initiate these discussions, citing a lack of skills, training or time. Or they believe that patients and families do not want or need to have these conversations, and they worry about triggering a sense of hopelessness.

Often, discussions do not happen, and the care plan consists merely of medications and treatments misaligned with patients’ goals. The required reporting for nursing homes (Minimum Data Set; MDS) and homecare (Outcome Assessment Information Set; OASIS) does not record care goals, the possible trajectory or even the overall plan. Near the end of life, physicians must work more closely together than ever to help patients and families manage expectations, make treatment decisions and match goals to care.

How can we achieve useful communication and reliable care planning? First, every form and document that patients must fill out or use when receiving healthcare should provide information about acquiring a basic care plan. Medicare’s measurement of physician quality could reflect how well they plan for care in chronic illness.

Second, we could ensure that a negotiated care plan will be documented when patients enter and leave the hospital or nursing home, upon hospice admission and every time the MDS or OASIS are filled out.Third, patients could demand information (and clinicians could learn to provide it) about the course of their illness, including ambiguities: a thoughtful discussion of what might improve and worsen, what the personal care needs may be and what matters most to the patient and family.

Finally, we could engineer strong decision support for clinicians and patients, including feedback from prior patients about how the care plan worked. We should raise our voices when care plans fall short. How it is that we have come to accept widespread false hope? Why have we tolerated clinicians making good incomes from unwanted tests and treatments? A bit of outrage would be a good thing.

Chronically ill patients and their families manage increasingly complex conditions. They deserve to know the medical situation, and clinicians need to know the social and personal information that shapes why patients and families want certain care strategies. Ongoing conversation and negotiation should engender a practical plan, tailored to the individual. That is the heart of reform for the last phase of life.

This article appeared in the November/December, 2011, issue of Aging Today, ASA’s bi-monthly newspaper covering issues in aging research, practice and policy nationwide.

key words: care plans, Medicaring book, Joanne Lynn

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May 272014
 

Family caregivers are the infrastructure upon which the lives and well-being of millions of frail elders rest. Without their presence, and without their filling in healthcare gaps to coordinate and manage care for their loved ones, whole segments of the healthcare industry would simply collapse.

Although caregivers can find the experience of helping others to be a rewarding one, most pay a physical, emotional and financial toll for their effort. Caregivers, who are often themselves midlife and older women, can compromise their own well-being. Those who leave the workforce to care for another adult lose hundreds of thousands of dollars in income, retirement contributions, and Social security.

Family caregivers are essentially volunteers for long-term care. They routinely plan care, making decisions large and small, that affect the lives of loved ones. They are care managers and coordinators, as well as providers. A 2012 United Hospital Fund and AARP study reported that nearly half of family caregivers provide complex medical care to loved ones–usually, with little or no training in what to do things as they manage medications, clean wounds, change IVs, and more.

Despite their tremendous responsibility for making the plan work, caregivers are seldom integrated into the care plan itself. MediCaring aims to change that dynamic, by identifying, recognizing, and supporting caregivers, and engaging them in development of a comprehensive care plan. While caregivers may appreciate the chance to help a loved one by providing intimate, intense care, they can also feel overwhelmed and exhausted by the tasks at hand.  MediCaring understands that caregivers are, in fact, the anchor of the care team.

To this end, MediCaring teams will assess caregivers, too, and understand their capacity to provide care. What is the their health status like, how are they doing? What challenges do they face, what concerns do they  experience? How is that information processed and addressed in the care plan? Does the plan also include ways to care for the caregiver?

Caregivers can benefit from a partnership with health care and social service providers.  Existing family-centered care models consider caregiver input essential for providing strategic and expert services for both the health and well-being of the care recipient and the caregiver.

The MediCaring team will be trained to recognize the level of support that caregivers need, and to provide information and resources that address those needs. MediCaring teams will also  recognize that caregivers these widely different needs will change over time and as an elder’s condition progresses or worsens.

Assessing caregivers is essential, as is a mechanism for offering them respite services.  Caregivers who feel burdened or overwhelmed experience declines in their own health. By offering services that enable caregivers to  become more competent and confident in providing safe and effective care to their loved ones, Medicaring will reduce some burdens and stress. Research indicates that such interventions must be multifaceted, including both training to enhance efficacy and personal support for emotional and coping skills.

Caregivers who serve as health care proxies face additional stresses. Making decisions for and about another adult is a difficult role to play. Those caring for people with dementia repeatedly face this challenge, and yet often receive little context or training to interpret the meaning or urgency of what a loved one needs.

Navigating the health care system is an onerous task, even for healthy adults. For those who are ill, or vulnerable, or overwhelmed, it can become impossible., Although a number of new programs have been developed to train caregivers, caregivers remain home alone, with inadequate knowledge and resources to deliver proper care.

PBS NewsHour released a telling infographic: “The $234 billion job that goes unpaid,” which characterizes the context of such caregiving. If family caregiving were a federal agency, it would be the fifth largest. Would policymakers simply ignore an entire nation? Or would we aim to help its citizens overcome challenges and realize opportunities? Would we invite them to the table, to conference rooms and negotiations? Would we want them to succeed? It all seems likely—and yet, we have not.

Our healthcare system—and our society—pay lip service to the value of such care, but seldom delivers the supports and services that would

key words: Joanne Lynn, Janice Lynch Schuster, MediCaring book, frail elders, family caregivers

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Mar 282014
 
Handbook for Mortals cover

The following post first appeared on March 27 as “New Chapters” via www.mydirectives.com. 

Starting productive conversations with your loved ones about your life decisions is not always easy. It takes a great deal of strength and initiative to take that first step. One of the best ways to take initiative is to find inspiration, so we would like to share one of our favorite books on the subject. This book has helped us, as well as our friends, start the conversation with loved ones about our medical wishes and decisions. So, if you’re looking for some inspiration, start with this:

We tend to believe that our options become limited as we grow older or when we face illness. This shouldn’t be the case. In fact, tough trials give us opportunities to grow, build strong relationships, restore old ones, and carpe diem– seize the day! Dr. Joanne Lynn’s Handbook for Mortals reminds us that we are a lot stronger than we think we are. All you need is a bit of insider wisdom to realize it. After all, you may already know that your perspectives define your happiness, but you can’t shape your perspective without knowing your options.

From her profound experiences in the medical field, Dr. Lynn, director of the Altarum Institute Center for Elder Care and Advanced Illness [now the Program to Improve Eldercare], shares with us long-developed know how on approaching our relationships and our medical preferences. Learn where and from whom you can seek advice and channel your concerns. Find cathartic ways to embrace your emotions. Learn how to talk to your family and friends about your opinions and ultimately, your decisions. This is not a book of tips and tricks; it’s a book that allows you to discover your own potential and set your own rules.

Feeling inspired yet? Get started with your own advance medical directive and start the conversation with your family and friends. If there’s one lesson to draw from this book, it’s that taking control of your medical decisions and sharing them with your loved ones is the best way to make any medical crisis a better experience for not just you, but everyone involved. We hope you’ll read Handbook for Mortals and share with us in the comments below, via Facebook and by reaching out to us on Twitter at @MyDirectives what you thought of it and how it changed you.

 

key words: care plans, advance care planning, aging, Dr. Joanne Lynn

 

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