What to Do about Nursing Homes?

 Posted by on August 7, 2020  2 Responses »  Tagged with: , , , , ,
Aug 072020
 

This is the draft as of August 7, 2020. Please add your comments at the bottom and we’ll update!

Eldercare has long been the stepchild of society’s pursuit of well-being – shunned by medical care and starved by social arrangements. A century ago, this did not matter much – people did not live so long, families were large and mostly on farms where taking in a relative was not so hard, and medical care did not have much to offer. The situation has changed, but the social arrangements have not kept up. COVID-19 has illuminated a number of the shortcomings. There will be a few short windows of opportunity to change things, but the advocates need to be ready with workable proposals. This blog aims to accumulate proposals that seem worthwhile for use by whoever wants to use them. Please add your comments and suggestions in the comments at the end!

Action Steps

  1. Everywhere that we see an opportunity, encourage broad public and leadership awareness of the high likelihood that each American will live with serious disability for a substantial period and that we are exceedingly poorly prepared to enable late life to be comfortable and meaningful. Write letters to editors, op-eds, and blogs. Call in to radio shows. Ask questions of candidates.
  2. Push to revise how we finance supportive care for elders. Allow pre-tax payment for long-term care insurance. Call for a new social insurance to cover “catastrophic” levels of costs from needing long periods of long-term care. Call for Medicare’s capitated plans (Medicare Advantage) to cover an understandable standard set of supportive services for defined situations.
  3. Generate data that will enable communities to understand how well their community is performing with regard to eldercare and that can monitor efforts to improve. We need visible data about the availability of home-delivered food, adapted housing and transportation, direct service workers, medical care at home, and the quality and reliability of personal care.
  4. Enable some local authority to monitor and manage eldercare on behalf of the community – could be the responsibility of the Area Agency on Aging, the public health office, a coalition of concerned entities, county government, or another approach – – but somehow, we need to create a locus of responsibility for improving performance.
  5. Strategize to reduce reliance on hospitals and nursing homes. They are essential in some circumstances, but many more people could be treated at home or in an outpatient setting, and many more people could go straight home from a hospital stay, IF the community had readily available and fully adequate supports for disabled people living in the community. So – advocate for more adequate funding for the Older Americans Act, which supports meals, care coordination, Area Agencies on Aging, etc. Advocate for more outreach to prevent abuse and neglect. Learn what is not available in your own community and push for that.
  6. Support family caregiving. Employers could seek to be flexible in leave, adjusted hours, and working from home. Respite care could be made available. Family caregivers could be paid in some circumstances and could get social security credits and Obamacare health insurance coverage.
  7. Improve the working conditions for direct care workers. Require a living wage, whether working in facilities or homes. Require conventional workers benefits. Ensure that they have the personal protective equipment and COVID-19 testing (or whatever else arises) that they need. Build career ladders with certifications and opportunities to advance.
  8. Push our organizations to be strong supports – AARP, Alzheimers Association, caregiver groups, professional organizations, provider organizations, political organizations, etc.
  9. Send in suggested questions for televised debates of candidates. Tweet to reporters.
  10. Express outrage over the forced isolation (solitary confinement!) of nursing home residents without even asking them about their tolerance for the risks, or enabling survivors of the infection to be more liberated from restrictions.
  11. Highlight the need for all elders to have comprehensive care planning, including advance care planning for medical care. Nursing homes and assisted living centers should have nearly 100% compliance and failing to undertake this work should be a cause for penalties.
  12. Study and respond to the evident disproportionate impact of COVID-19 on nursing home staff and residents who are African-American, Latinx, or immigrants.
  13. Encourage very limited liability protections for alleged shortcomings arising from COVID-19. The country should avoid a plague of lawsuits, but whatever protections are put in place should be limited in time and scope.

I’ve become quite fond of the hopefulness of this quotation – and a devotee of having good ideas “lying around.” So – let’s get behind them and push them to be politically inevitable!

“Only a crisis – actual or perceived – produces real change. When that crisis occurs, the actions that are taken depend on the ideas that are lying around. That, I believe, is our basic function: to develop alternatives to existing policies, to keep them alive and available until the politically impossible becomes the politically inevitable.” Milton Friedman

This is the draft as of August 7, 2020. Please add your comments at the bottom and we’ll update!

twitterrssyoutube

Should Anyone Live in a Nursing Home?

 Posted by on July 13, 2020  2 Responses »  Tagged with: , ,
Jul 132020
 
Dr. Joanne Lynn Portrait
Joanne Lynn, MD

By Joanne Lynn, MD

Nursing homes are so widely shunned as being thoroughly undesirable that many advocates have proffered that they should be shuttered, and all care of disabled persons should be “in the community” and not in facilities. That refrain is growing with the obvious risks of COVID-19.

I believe that we need to take this crisis as an opportunity to revise how we deal with long-term disability and the need for services and supports by persons who cannot manage daily living for themselves. Who makes up the populations that probably should have nursing homes available? I think there are five general categories for adults (I’ll leave children to others who have relevant experience):

(1) Adults discharged from hospitals who need a short period of around-the-clock support and therapy in order to be capable of going home (or to another community setting), often in part because their home situation does not provide enough appropriate and reliable support;

(2) Severely brain-damaged persons, e.g., from severe dementia, strokes, or hypoxia, who are unaware of their surroundings, and lack available family or loved ones to assist with in-home care, even though most will still be capable of suffering from adverse symptoms;

(3) People who need a great deal of personal assistance or supervision (for example, around-the-clock paid care) and who do not find it very important to live independently in the community rather than in a home-like and reliable congregate setting;

(4) Elderly people with substantial care needs who prefer congregate living and either can pay for it privately or the costs to public funds are lower in this setting; and

(5) People who need an in-patient setting while dying. Inpatient hospice should be available for serving this group. It is a serious shortcoming of the present arrangements that dying elders are often sent to skilled nursing for “rehab” because Medicare covers that service, when what they really needed was inpatient hospice care for a short time, mostly less than a month.

What sort of facility environment is ideal for each of these populations? We might especially consider the post-hospital and unaware categories (1 and 2 above), in contrast to persons who need long-term supports due to substantial disabilities (3 and 4 above). For those first two groups, the nursing facility can be set up to feel rather like a hospital – let’s call it “post-hospital.” The post-hospital resident will not stay more than a few weeks and does not expect to make friends.  The severely unaware resident may stay for years, but still will not be able to make any personal connections. The staff will care about these residents, but a less home-like setting is not likely to have a negative impact on the residents.

In contrast, the usual elderly person living with serious disabilities (#3 and 4 above) needs an environment that is set up for living – comfortable, home-like, conducive to conviviality, and responsive to personal preferences and priorities. This really should become the resident’s home. The care plan needs to be anchored in the resident’s situation and preferences, and it needs to be flexible to accommodate communal living, just as it is in family living. In general, these facilities need to be set up to be, or to seem to be, relatively small groups where staff and residents get to know one another and collaborate.

The hospice in-patient environment needs to be home-like and comfortable for visiting, but it does not need to try to create long-term relationships, create a home or have shared activities like a long-term residence should.

Whatever images you fill in to customize your vision of ideal long-term care facilities, you’ll agree that current nursing homes mostly fall far short. Not only might they be regimented, understaffed, and unresponsive; but with COVID-19, they have become very nearly prisons without visitors. For more than three months, most nursing homes have barred nearly all family and friends – and even ombudspersons and consultant physicians. Residents have been restricted to their rooms and, if the facility has all the recommended personal protective equipment, the residents have not seen a smile or felt a human touch for all that time. Neither the residents nor their families were asked about this plan.

Imagining myself as a nursing home resident with profound physical disabilities but substantial awareness, I would prefer to take my chances with COVID-19, prudently, in order to visit with family, to experience group activities, and to hold a hand. I don’t know how many residents would feel as I do, if they were aware of their likely future course with “protection” and with more “openness.” But I do know that none were asked, and none are being asked, about the merits of these policies. I’d consider this to be age-ist in a most repugnant way. Public health has the authority to constrain self-determination for a while, but surely not for so long. We’ve been willing to impose solitary confinement on 1.3 million nursing home residents without input from them or from those who love them – for about 4 months, which is a large proportion of the rest of their lives.

We must not allow the experience of COVID-19 to mean that all facility-based long-term care becomes as sterile as hospitals often must be. Directions that would be more helpful and appealing would include having much smaller settings, so that outbreaks of COVID-19 or future infections would be easier to contain. Staff should be paid enough and should have career satisfactions so that they can work in one setting and continue to support and befriend a set of residents over time. Facilities should be ready to deal with necessary isolation and potential expansion to help serve their communities. Families, friends, and community groups should be welcome, except for short periods when community infection risks are too high. All residents should have comprehensive care plans, including how to address worsening health status. Medicaid rates must be high enough to support good care and fair wages. Facilities that rely on Medicare or Medicaid payments should be required to spend 85% of their revenues in direct patient care, parallel to the “medical loss ratio” for medical care insurers.

It’s time to rethink facility-based long-term care – its aims, its financing, its place in the society. Let’s be ready for the opportunities for reforms that might be upcoming.

twitterrssyoutube

A Pragmatist’s Advice for Nursing Homes

 Posted by on March 28, 2020  5 Responses »  Tagged with: , , , , ,
Mar 282020
 

Joanne Lynn, MD, MA, MS

March 28, 2020

Note: this post is aimed to help people leading or working in nursing homes, and regional planners. If you are someone who is worried about your relative in a nursing home, you may find this a bit overwhelming, and you’d certainly need to do some translation. Also, this is the informed opinion of one geriatric and palliative care physician. Undoubtedly, this can be improved. If you see an improvement, please let us know at [email protected]. As with all of our materials, this is published with a Creative Commons Attribution-NonCommercial 4.0 license. In short, feel free to re-use this in any way you like, just give us an attribution and say whether you modified it. We would appreciate your letting us know how you use it.

Nursing homes are being held to an impossible standard – as if they could prevent outbreaks in these settings. CMS cited the nursing home in Kirkland for three “immediate jeopardy” deficiencies and threatened them with closure, and one of the deficiencies was failure to have a back-up physician! How many nursing homes are going to have a reliable back-up physician in a pandemic?!

Below is the outline I’ve put together to help guide the thinking of staff and leadership in nursing homes. The fundamental claim, beyond all the details below, is that the country desperately needs nursing homes to step up and provide care for a LOT of people who will die in this pandemic.

Nursing homes have no way to avoid outbreaks – they can reduce the risk and increase the likelihood of delay, but it still is a roulette. Unless we get an effective vaccine or treatment, eventually almost every facility will have their crisis. More than 20% of their residents will die and another 20% or more will be much less functional for having been so sick. During the peak of the pandemic, many will be unable to be transferred to hospitals. This is not the result of inattention in the nursing homes – it’s the combination of the behavior of this virus and congregate living of very disabled elders.

Hospitals and planners need to value these facilities and include them in the decision-making. The solution is not generally to send out surveyors to enforce infection control; it is to get masks and other PPE – and morphine – to nursing homes. It’s to encourage calls for help, rather than issuing penalties for situations that are built into the way we’ve structured nursing home care. Similar issues affect assisted living, home care, and hospice.

I know this is tough stuff. I know it is hard to say, and harder to implement. But it is the nursing homes, home care, hospices, and assisted living that shortly will become the sites of a great deal of serious illness and death, as the hospitals fill up and overflow. Others in the health care system and the government would do well to help nursing homes to do their generally quite unfamiliar job, since they won’t have the option to opt out.

1. There will be serious outbreaks in (many, perhaps most) nursing homes

  1. The virus has a 5-day average incubation period and is infectious during that time – before any symptoms
  2. Many people (especially younger people) have no symptoms at all – and still are infectious
  3. Nursing homes cannot always completely isolate residents, at least not for months
  4. Nursing home staff must each provide care for multiple residents
  5. Nursing home staff are not being given protective equipment for each contact with a resident (or for any!) – and some residents can’t tolerate protective equipment on themselves or their caregivers
  6. The swab test has a substantial false negative rate – 37% in the one reported study – so a negative test might be misleading
  7. The case fatality rate in nursing homes is upwards of 20%, and those who survive a serious case will often be more impaired afterwards

2. Since all nursing home residents are at substantial risk, we should know what they would want to happen if they got a bad case

  1. A bad case gets very bad over a few hours or a couple of days – not much time to make decisions
  2. Many of our residents (or their surrogate decision-makers, usually family) would look at their odds of surviving hospitalization and ventilator support and realize that this would be an undesirable way to come to the end of life and would prefer to stay on-site, where things are familiar – and to have hospice-type care. Some might even be aware of the limitations of hospital beds and ventilators and altruistically want to leave those resources to younger people.
  3. But nursing home staff can’t count on being able to lay this out when the person is becoming very sick, and staff might not be able to find their surrogate decision-makers quickly – so nursing homes need to get decisions made in advance and know which residents would not want a transfer.
  4. This requires that we carry out a substantial number of sensitive discussions quickly – this week, or as soon as possible. Initial experience shows that capable residents and the surrogates of cognitively disabled residents are remarkably open to this discussion at this time – they have usually been thinking about it.
  5. And our hospitals may well become so overwhelmed that they cannot accept transfers, in which case the nursing home is going to have to do the best it can to support the person’s life and to ease their suffering.

3. How to discuss resident-centered preferences in advance of illness, in the context of Covid-19

  1. Emphasize that you (the person seeking to clarify preferences) are trying to be sure that everything is done in the way that the resident wants (or would want, if talking to a surrogate)
  2. Check on what the resident (or surrogate) already knows about the situation and how it applies to them
  3. Offer to fill in gaps in knowledge
  4. Ask if the person already has a decision in mind – and if so, assess whether it is reasonably well-informed and get that documented
  5. If the person is conflicted, ask them to tell you more about what considerations are in their mind and document those, and come back a day or two later and ask if they have given it more thought and offer to hear what they are considering.
  6. This conversation may be done with a religious counselor or a social worker – and it can be done over the telephone or over an audio-video connection like Skype or Zoom (now that using these platforms does not violate HIPAA requirements)
  7. There are some good suggestions on how to phrase your conversation at:

4. Treatment of a very seriously ill person with respiratory failure

  1. Obviously, a very sick person with respiratory failure will need oxygen, so each nursing home needs to have enough ways to get oxygen to our residents. Nursing homes may need to try to stock up on oxygen concentrators, tanks, tubing, and masks.
  2. Air hunger is the most severe symptom these residents are likely to have, and the treatment for that is morphine (or equivalent of another opioid medication).
  3. For most people, there is a dose of morphine that allows the patient to relax and still to have enough oxygenation to survive and maybe to recover. Sometimes the pneumonia is so severe that the only way to stop overwhelming suffering is to be deeply sedated, and nearly all patients in that situation will die. The severe suffering of the feeling of suffocation justifies relieving the air hunger with morphine even in these situations.
  4. Morphine can be given in a number of ways – under the tongue, in a suppository, under the skin, as a pill, or as an intravenous drip. The method used will depend upon supplies and the clinical situation.
  5. In most situations, the dose needed will be found by titrating repeated small doses until the patient is reasonably comfortable and then continuing that dose until the patient is better, symptoms worsen, or the patient dies. Testing for improvement may require backing off on the dose for an appropriate interval.
  6. Handling opioid drugs will require the usual cross-checks to prevent diversion.
  7. If it is permitted, it might be wise to be sure that the nursing home has some supplies on hand, or that the pharmacy is keeping a substantial supply on hand.
  8. Many nursing homes will benefit from having the backing of the local hospice or hospices, whose physicians and nurses will usually have more experience. Some might set up a consulting line to check on next steps. Some might set up rapid enrollment into a formal hospice program. In general, nursing homes would do well to consult with their hospice(s) in advance of any outbreak and settle on a plan.
  9. Under the law, opioids left at the time of a patient’s death must be wasted and documented as wasted. In the context of this pandemic, the nursing home may want to delay any wasting of such a valuable resource and instead provide for locking up any remaining supplies or asking their physician or hospice to manage this off-site. There are efforts being made to regularize this practice during the pandemic.

5. Removal of the bodies of residents who have died

  1. The nursing home would do well to talk with the major funeral homes and crematoria in the area to be sure that they are staffing up and stocking up, and that they understand the urgency of removing the body promptly
  2. The usual requirements for notifying the coroner, getting death certificates signed, and managing the grieving family may need to be reconsidered during this epidemic. The nursing home will need to stay abreast of any changes and to reconsider their own practices

6. Serologic tests for immunity

  1. Within a few weeks, tests for immunity to Covid-19 virus should begin to become available.
  2. IF a person is immune and if the person is not still shedding the virus (takes about 2 weeks after onset of the disease, but can go longer, up to a month) as documented by a diagnostic test – that person is no longer a target of the virus nor a person who can spread the disease (with ordinary good hygiene)
  3. If a nursing home can get those tests for its staff, you can tell which of the staff are already immune, and those staff can probably work with Covid-19 patients without risk to themselves.
  4. Likewise, the nursing home could tell what family members can visit and what current and future residents are safe from this virus.
  5. Guidance on this testing is likely to appear within a few weeks.

7. Engagement in the regional planning process

  1. Nursing homes must be “at the table” when disaster planning is underway. A region may need to designate some facilities for all Covid-19 residents, perhaps because they had an outbreak and now have mostly immune staff and residents. Some regions may call on nursing homes to take in sick and disabled elders from the community, beyond their typical bed capacity, in order to help elders who are sick and live alone or who have lost their caregiver.
  2. In order to be “at the table,” nursing home organizations or ad hoc coalitions might support one or two representatives who are knowledgeable and able to communicate to all affected facilities.
twitterrssyoutube

MediCaring Communities: Getting What We Want and Need in Frail Old Age at an Affordable Cost

 Posted by on June 20, 2016  No Responses »  Tagged with: , , , , , , , , , , , , , ,
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.

twitterrssyoutube

Don’t Accept Medical Errors as the Standard of Care for Frail Elders

 Posted by on September 28, 2015  1 Response »  Tagged with: , , , , , , , , , , ,
Sep 282015
 

By Joanne Lynn, MD

If you are hoping for a good night’s sleep, don’t read the stories told by Marcy Cottrell Houle of her parents’ last years of life just before you go to bed. But do read The Gift of Caring: Saving Our Parents from the Perils of Modern Healthcare [http://www.thegiftofcaring.net/], which Houle wrote with geriatrician Elizabeth Eckstrom over a cup of coffee. That will get you fired up. The litany of catastrophes that occur in our poorly organized medical care system—preventable, avoidable suffering—is overwhelming. So far, though, no one is listening. No one is reacting in horror, and no one is changing the system to stop these errors. We need to turn up the volume of our protests!

Marcy’s father was once abruptly discharged from the hospital to a nursing home that lost him! The nursing home put him in a room at the end of a hall and simply forgot he was there! No hygiene, no food—nothing was provided for him. In fact, the staff forgot to give him water for so long that he developed renal failure. He was later drugged to manage his behavior, which was eventually traced to pain, readily treated with acetaminophen. His case spiraled on and on.

Marcy’s mother had all the geriatric complications: delirium, falls, anti-coagulation, terrible aides. Worse still were her run-ins with physicians who wouldn’t pause to make sense of sudden changes in mental status, because they just assigned every dysfunction to “old age” and “dementia,” even when her mother had been functioning quite well just a day before.

Yes, it’s all there, terrible and terrifying. Dr. Eckstrom writes a chapter after every calamity about how patients and families might prevent or cope better. The book is a rare gem to help people who must navigate our “care system” for frail older people.

But it is maddening.

If you bought a toy that fell apart in a dangerous way, you could report it to the U.S. Consumer Product Safety Commission, and they’d investigate. If a person has a near miss from a safety defect in a car, the National Highway Traffic Safety Administration wants to hear about it immediately. If a medication causes a serious side effect, the Food and Drug Administration has a consumer online reporting form. Indeed, any of these and more pop up when I search online. But just try reporting that your dad was lost in a nursing home. You have to be knowledgeable enough to find the ombudsman program or the Quality Improvement Network or know a lawyer willing to threaten to sue in order to call attention to a grave mistake.

The problems in care of the elderly are not just “errors” in the usual sense of unusual mistakes. In fact, they are baked right into our current delivery system. The errors are not just a nurse or aide slipping up on some critical step. Instead, all the nurses and aides and everyone else are working in a system that is so dysfunctional that actions that cause pain or neglect are not even called out as errors. Consider that I can go up to an ATM in the remote wilderness somewhere in the world, and the banking system will know whether I have money in my account; but if I am discharged from the hospital, my community physician won’t know anything about what happened to me in the hospital, often even if she’s been my physician for years and I told the hospital folks this.

Think about the profound errors that are made when medical professionals simply have no idea what matters to patients and their loved ones. They never ask! For example, consider two men living with the same advanced degree of disability from Parkinson’s disease. One might want to spend anything and do whatever is necessary in order to survive long enough to finish a personal project, while the other might really want not to leave his spouse impoverished. The second man might feel at peace with the fact that life is coming to its end and even to feel OK with letting it end a bit early in order to have things fall into place for those he loves.

Today, emergency room staff do not know any of this because of the way in which we have put this system together. Both these men experiencing a sudden deterioration, however, would have to use the emergency room, because we don’t have 24/7 on-call physicians organized to come to their homes. We don’t even have home-delivered meals for many elderly persons in need in most of the country; the waiting lists are routinely more than 6 months long, because we have not chosen to fund the Older Americans Act adequately.

What are we doing? And how can we complain effectively? Each family somehow believes that its situation is bad luck or “how things are.” There is no benchmark by which to set expectations, so the families accept the errors, dysfunctions, suffering, and impoverishment that so often come with disabilities in old age. Why are the errors of our system not being debated or even mentioned in political campaigns? How can we change this?

We can start by changing our abysmal expectations of the services that we get. Let’s question why the care system is so deaf to the priorities of our loved ones everywhere we can—in the newspapers, in the candidate debates, through social media. Let’s reengineer current services, build highly reliable care systems in our communities, and see what it really costs. Projections for the costs of a community-anchored care system that is person centered and flexible enough to bring most services into the home are not much different from current care arrangements. Let’s record stories, good and bad. Let’s figure out how family caregivers can become politically powerful. Why is it, for example, that Medicare has no standing advisory committee speaking for the interests of its millions of beneficiaries? If we are lucky, we will grow old. So it’s our future, too, not just our parents’!

We’ve started an initiative to get family caregiver issues on the party platforms in all states that generate party platforms. You can join the Family Caregiver Platform Project initiative. It takes very little time and gets leaders talking. Go to http://caregivercorps.org to sign up now.

There are some bright spots on which we can build: The Centers for Medicare & Medicaid Services has introduced payment for advanced care planning discussions between Medicare beneficiaries and their physicians. We agree that this is a good idea and strongly support it. But care planning is not just an end-of-life matter; it needs to be comprehensive and a standard practice. All health care providers and social services agencies should pursue the goals that the elder and family actually most want.

What else can you think of? We need other leverage points that would focus the pent-up frustration of millions of family members who have already witnessed the misery of ordinary elder care. What should have been available to Marcy as she helped her parents live their last years? Hers is a story that we can all absorb and tell others; then we can go out and insist that our care system change. Eventually, Marcy and her family found some exceptional paid caregivers, and together they achieved some good experiences, even triumphs. But this came after needless suffering. She would say that she’s lucky, and others would say that she’s especially skilled and capable. Most of us need a care system that does not require exceptionally skilled and capable family members or good luck. Read her book, and help us push for a care system that works reliably for our old age!

twitterrssyoutube