Part II: Building an Aging Friendly Community

John Carney
Vice President-Aging and End of Life
Center for Practical Bioethics

October 31, 2008

The Center for Practical Bioethics recently hosted a community forum to present an update on the KC4 Aging in Community initiative. A PowerPoint presented that evening can be viewed by clicking here.

During the Q & A portion of the meeting a number of questions were raised. This is the second and final installment of that session.

Answers are provided by John Carney, the Center’s vice president for aging and end of life. Please feel free to ask questions and share comments by clicking here.

We need to take a proactive stance with the Health and Planning Commissions of each city – both sides can learn from the other.

Creating aging friendly communities requires us to identify the stakeholders whose involvement will be required to achieve structural and policy changes. Governmental entities clearly will need to be part of the solution.

Top administrators in city, county, and regional governments can help in clarifying and supporting the departments of government which will most directly relate to each “pillar area” (caregiving, health and technology, housing, mobility, and civic engagement). It makes sense to dovetail our efforts with area Health and Planning Commissions, to ensure we that we work in tandem in a proactive, positive, and respectful manner.

For example, planning personnel are becoming engaged in mobility issues and are being asked to address the policies and codes that may create barriers. City Planners are responding well with some cities incorporating 'mobility' into the strategic plan. It is our goal that all cities incorporate 'mobility' within the strategic planning process.

How will the travel industry adjust for the increased number of senior travelers?

The initiative has not done a lot in this area. Our work has been more directed at navigating local environments (including one’s home) or getting to/from necessary destinations.

The leisure travel and entertainment industry has recognized the growing market for seniors focusing primarily on group trips. In local KC focus group meetings we learned that local casinos have contracted with bus companies to provide regular “day” trips to the casino.

Specific information on the impact to the travel industry has been beyond the scope of our KC 4 Aging in Community project. Internet savvy seniors will continue to grow for the individual markets. Cottage industries catering to the more affluent seniors in retail side of travel should also show strong growth.

Matching programs for at-risk children and seniors?

Currently, the Volunteer Centers and the Retired Senior Volunteer Programs (RSVP) associated with the United Way of Greater Kansas City and the United Way of Wyandotte County help connect potential volunteers with programs and agencies needing volunteers.

Most agencies require interviews with prospective volunteers so that both the agency and volunteer have a chance to evaluate if this would be a good fit or match. Each agency also has its own particular guidelines for orientation, training, and perhaps other requirements.

This is a good starting point, but we look forward to the future as our initiative discovers new ways of matching the skills of volunteers and the work interests of seniors with the needs of the community.

31.3% of the 300 million in the US poor; what attention is being given to this population?

To assure that seniors remain in the community and in their preferred residences, we will have to work hard to address the needs of the poor and near poor. The numbers of elderly, especially women, who rely on Social Security as their sole source of income is staggering.

Recent developments in the housing and financial sectors pose additional risks. The work of the initiative must focus on neighborhood mobilization resulting in effective outreach, caregiving support programs that appropriately intervene and mobility and transportation/delivery assistance that is customized.

Innovative intergenerational housing maintenance activities currently in existence in KC or in model programs across the country can be shared and replicated through our work groups and civic engagement activities.

Building an Aging Friendly Community

John Carney
Vice President for Aging and End of Life

October 24, 2008

The Center for Practical Bioethics recently hosted a community forum to present an update on the KC4 Aging in Community initiative. A PowerPoint presented that evening can be viewed by clicking here.

During the Q & A portion of the meeting a number of questions were raised. The first installment of these questions and answers are available with this; the remaining questions will be addressed in the October 31 edition.

Answers are provided by John Carney, the Center’s vice president for aging and end of life.

Please feel free to ask additional questions and share comments by clicking here.

Insurance companies have a requirement for community investment – how can we get them involved?

Blue Cross/Blue Shield of Kansas City has been participating in some local groups who meet regularly with our steering group members, but we’ve not really reached out to them or other local carriers.

This is a good reminder for us to get them at the table - especially as we look at the growing Medicare Advantage enrollees and our need to support healthy aging - walking and exercise programs.

Thanks for the nudge!

In Orange County, California, very inexpensive transportation (door to door if necessary – or corner) to hospitals, doctors, store, even friend’s house; why can’t we do that too?

The initiative is exploring a number of models that might be replicated in KC. For subsidized transit we have the added challenge of state lines and more than 100 jurisdictions to contend with.

Locally, Jewish Family Services identified volunteer programs, taxi and on-demand public transit within the KC region that provide curb-to-curb or door-to-door services.

Our challenge is to find ways to strengthen those programs so they can expand and meet the demand of the entire region. It will also be important for other assets to be developed that allow walking, slow moving vehicles, bikes and public transit to grow which will help keep demand for the more personal services to a sustainable level.

The local survey we conducted as part of this work group’s effort identified more than 45 different entities providing some form of transportation services in the area.

In today’s world, why did you choose “50” as minimum age? It should be much later, I feel.

It’s not so much designating a minimum age as it is identifying those in the latter half of life for whom these issues are of growing importance. We agree in principle that “50+” isn’t considered aged, but are seniors 55, 60, 62, or 70 years of age?

Consider these factors:

1) Ageism creeps in with terms like “elderly” and “seniors” and many older adults reject the designation of being “old” as demeaning or portraying them as dependent . Their objection affects our ability to engage them, though it points to our need for acceptable language to describe persons in a later stage of life.

We’re following the lead of national organizations that have adopted 50+ as a way of achieving uniformity in messaging.

2) Another issue is that as we grow older, persons are in myriad stages of health. We focus on those who are “needy” and “at risk” but also those with ability, strength, wisdom and resources.

While reducing discrimination we emphasize inclusiveness associated with the natural transitions that occur, for most of us, in the latter half of life – such as “empty nesting”, downsizing, increased caregiving roles (attendant to the aging process or chronic disease), and mobility and transportation limits (eyesight acuity and response reflex).

For the benefit of KC, it is important that persons 50 and older become familiar with the effort because we will be engaging them first. Building a safe future for a community that all ages can enjoy is part of building an aging friendly community. It is our legacy.

John, I know you had to hurry through your presentation, but there is a lot of interest in seniors (and others) having a “medical home.” This gives them a tremendous amount of comfort, that they know they will be both welcome and known by their primary care provider. Should this be a key part of any project for our aging?

Medical homes need to become a part healthcare fabric for persons of all ages, but most certainly for seniors who consume a disproportionate share of healthcare resources. The emerging Medical Home model has a long way to got before taking root, but a recent issue of the New England Journal of Medicine dedicated a number of articles proscribing what it will take to make this happen.

CMS (Medicare and Medicaid) Demonstration Projects are leading the way and it may be possible for us in Kansas City to piggyback on some of those efforts due to the American Academy of Family Physicians headquarters being here. Time will tell.

According to experts, one challenge facing the Medical Home model is the right mix of financial incentives that will encourage primary care physicians (or the few available geriatricians) to take on the role of coordination. Expanding the roles of other professionals and not defining Medical Home as the exclusive domain of a physician (medical) model but more of an interdisciplinary team will also help.

Palliative care expertise is growing in a number of professions and many seniors need help with self-managing their chronic diseases. But seniors and their caregivers have to better understand disease progression to improve decision making. Advanced Nurse Practitioners and Physician Assistants can assist in that effort.

Technology (and respectful remote monitoring) is becoming more affordable, so with the advent of electronic medical records we should see enhanced capacity for collecting, retrieving and analyzing medical data to help primary care physicians and their teams as well.

OPOs, stop and think!

Tarris Rosell, PhD, DMin
Program Associate
October 23, 2008

How dead does a “cadaveric” organ donor need to be before the heart is removed for transplantation? Or ought death be the necessary precondition for doing so?

Even asking these questions may seem crass and insensitive to those families who have given the “gift of life.” It also is ringing alarms for some Roman Catholic pro-life moralists, according to a recent article in The Economist (http://www.economist.com/science/displaystory.cfm?story_id=12332939).

These are matters more commonly discussed in medical and bioethics journals. Yet organ procurement policies do indeed have something to do with economics, despite U.S. laws forbidding commerce in transplantable organs.

Donors or their families receive no compensation, or ought not, we say; but organ procurement organizations (OPOs) pay decent executive salaries and transplant clinicians may receive even better ones. Transplantation is expensive medicine, with much money legitimately trading hands.

Another interest to economists is the law of supply and demand, which is a perpetual problem for transplanters. Organ supply is woefully short of patients’ demand.

What to do? In a recent New England Journal of Medicine article (http://content.nejm.org/cgi/content/full/359/7/674?query=TOC), Dr. Robert Truog has suggested that we increase organ supply by dispensing with the “dead donor rule.”

(See Center blog for 8/20/08: http://practicalbioethics.blogspot.com/2008_08_17_archive.html)

He argues that we should procure vital organs like the heart and lungs before either cardiac or brainstem death so as to minimize cell death in transplantable organs and thereby maximize transplant success.

Criteria for doing so, says Truog, would be prior signed consent of the donor and a subsequent situation of irreversible severe brain damage with do-not-resuscitate orders.

This worries many of us, notes The Economist, and particularly so some Catholic scholars who will gather at the Vatican in November for a conference on organ donation. “O death, when is thy sting?” quips the journalist. “OPOs, stop and think!” may be the more somber religious pro-life response to Truog and his proposal.

I too think this is a matter not to be ignored in an era of short supply and high demand for human body parts. Clearly, moral boundaries and clinical guidelines are shifting. Perhaps that is not a bad thing. But more thoughtful dialogue is needed, both by economists and ethicists, religious scholars and organ procurers, those who transplant body parts and those who would receive them.

Demand alone is insufficient moral justification for increasing supply by any means imaginable. On this we all agree. Could we have imagined, even a short time ago, that a serious proposal would be offered for recovering vital organs before declaration of donor death?

The Candidates on Health Care

John Lantos, MD
John B. Francis Chair in Bioethics

October 16, 2008

This week’s New England Journal of Medicine has articles (supposedly) by Barack Obama and John McCain, outlining their health care proposals. They show how the two candidates present radically different views of how to fix the health care system.

The centerpiece of Obama’s philosophy is, “Through a national health-insurance exchange, people without employment-based insurance or who work in small businesses will have a choice of private insurance policies at rates similar to those offered through large firms. To promote competition among insurers, we will also give patients a new public-plan option, providing the same coverage that is offered to members of Congress and their families.”

The centerpiece of McCain’s is, “to replace the current tax exclusion of the value of health insurance from employees' taxable compensation with a new refundable tax credit of $2,500 for individuals and $5,000 for families. Families can use the tax credit to continue their employment-based insurance or to find a plan that better meets their needs.”

In other words, Obama would build, as a safety net, a new public health insurance plan – perhaps an expansion of the Federal Employees Health Benefit plan – while McCain would rely upon the market to force insurance companies to develop affordable options.

Both plans are complex. Both candidates state, as a goal, that all Americans will have health care.

Joseph Antos, of the American Enterprise Institute, offers a critique of the Obama plan (Symptomatic Relief, but No Cure). David Blumenthal, of the Institute of Health Policy, critiques McCain’s plan (The McCain Plan for Health Insecurity). David Cutler and Gail Wilensky offer a video discussion of the future of health care.

Taken together, the essays and discussions offer a concise view of the opposing viewpoints about how to reform health care. Check them out!

To share your comments on the candidates’ proposals, click here.

Report or Promote?

News media often caught in the middle when reporting on medical research studies

News articles reporting on medication studies often fail to report pharmaceutical company funding and frequently refer to medications by their brand names despite newspaper editors' contention that this is not the case.

That’s the conclusion of a study in the October 1 edition of the Journal of the American Medical Association. With that in mind, we asked Alan Bavley, medical writer at the Kansas City Star since 1988, to comment on how he and the Star make coverage decisions on such studies and other research.

Here’s the interview edited for length and clarity. Share your comments by clicking here.

What criteria do you and the Star use to determine whether or not a story on drug studies will be covered?

First of all, I rarely do stories on drug studies. That's a choice I have made for several reasons:

Since I am a medical desk of one at the Star, I have to select carefully which stories I report and which we let wire services cover. Not many of the drug studies that appear in the journals I monitor rise to the level of something I feel compelled to cover. (Drug comparison studies or studies of drug efficacy in particular situations may be highly valuable to a clinician, but may have little meaning to a general newspaper audience.)

How do I judge something's news value? That's more art than science and would need a whole separate discussion.

Often when I learn about a new drug, it's when the Food and Drug Administration has just approved it and the manufacturer is promoting it to the press. I don't want to write stories about any things that are essentially product or service promotions, so I pass on these.

There's an ethical concern here, as well. Some drugs, like COX-2 inhibitor pain relievers, sounded like great ideas. But it took time for their side effects to become apparent.

I don't think it's wise to write enthusiastically about the latest drugs when a lot of the evidence is still out. I would have hated to have been one of those reporters who wrote about that new fen-phen diet craze.

Since Kansas City is the home to the Stowers Institute and other research centers, does that influence your decision to cover a scientific study generated locally?

Remember what I was saying about the art of news judgment?

Well, proximity increases news value. I'm more likely to cover good research when it is produced locally. And when a national clinical study involves local investigators I'm more likely to write about it myself than to rely on a wire service story.

Your story on October 5 addressed conflicts of interest for doctors receiving gifts from pharmaceutical representatives. Is there a similar policy in place for reporters covering the industry?

The Kansas City Star has an extensive conflict of interest policy regulating our interactions with the people and institutions we cover. (Click here to review.)

A story in the Boston Globe noted a "Statement of Principles" by the Association of Health Care Journalists to "investigate and report possible links between sources of information and those who promote a new idea or therapy" and to "report the complete risks and benefits of any treatment, along with the possible outcomes of alternative approaches."

Is this breaking new ground or have journalists generally been following such principles?

The AHCJ statement of principles is a lengthy set of guidelines for good, thorough, sensitive and ethical reporting. Reporters have been receiving advice of this kind for many years from many sources. Reporting on the source of funding for studies started to appear more frequently after medical journals themselves began reporting this information with the studies they published.

Have journalists generally been following such principles? I would say they generally have been guided by such principles.

In an ideal world, these principles might always be observed. But journalism is still a rough and tumble environment. There are deadlines to meet. Limited space in a newspaper. Limited time for a broadcast.

We try to do our best, but no, we can't always report with the thoroughness suggested by AHCJ.

The news media can be easy to target with charges of "biased" coverage. Shouldn't it also be the responsibility of consumers of news to seek out as much information as possible when presented with a new scientific study?

I can't think why any newspaper reporter would be deliberately biased toward a particular drug or treatment. We don't prescribe or treat. And we shouldn't have a financial, political or emotional investment in any particular treatment.

Reporters are people who just like to tell people stuff, interesting facts, compelling stories. Let the chips fall where they may.

And should consumers seek out more information about the drugs they take? Certainly. Newspapers report the news about drugs; they're not intended to be a PDR. Of course, patients should discuss medications with their doctors and pharmacists, read the package inserts, and go online or to their neighborhood library.

A newspaper isn't the final word on anything. After all, there's always going to be an entirely new one tomorrow.

Links:

Experts Conclude Pfizer Manipulated Studies, New York Times, October 8

University: Stem-cell study used falsified data, Associated Press, October 8

What do you think? Share your comments by clicking here.

"I'm not afraid to die: I just don't want to hurt."

Tarris Rosell, PhD, DMin
Program Associate
Center for Practical Bioethics

An 81 year old grandma with terminal cancer expresses her final wishes to the family. And all of us understand. Some may fear dying, but no one wants to suffer.

“Palliative care” is the sort of health care that aims to minimize suffering, to relieve the hurts of patients, to focus on care rather than cure, relief if not recovery—to keep us comfortable.

It’s not just for those who are old and dying, either. “Hospice” is palliative care at the end of life; but palliation or comfort care is something that all of us want whenever we’re hurting.

Sadly, it is far too common to find patients uncomfortable and in pain, whether hospitalized, in nursing homes, or at home. Studies show that 25 million of us undergo surgery each year and most of us, 60%, will be undertreated for our pain.

More than 60% of cancer patients are in the same boat, uncomfortable despite treatable pain. Chronic, non-cancer pain afflicts 50 million Americans. At least some could be palliated.

More distressing might be suffering due to anxiety, depression, medication side-effects, the burdens of being ill and being treated. Could palliative care help?

Fortunately, it is now possible to keep most patients comfortable. We have the knowledge, if not yet sufficient resources, to manage symptoms well and reduce or even eliminate pain, especially for the seriously ill and dying.

Palliative medicine is far from perfect and palliative specialists are too few. But their numbers are increasing. Palliative care teams and consultations are becoming more common. Those who are blessed to receive such care are helped more often than not.

With the advent of palliative medicine, comfort happens—but it doesn’t just happen. We might have to ask or insist. Family members and faith leaders need to remind medical caregivers untrained in palliative medicine that comfort is a priority and that Grandma deserves the very best palliative care available.

She may need an advocate for palliation especially if there comes a time when words no longer form on Grandma’s own lips. Then someone must say, “She’s not afraid, you know; she just doesn’t want to hurt.”

Do you?

Links:

-- The Center for Practical Bioethics website is a treasure trove of print resources, many of them freely downloadable: http://www.practicalbioethics.org/cpb.aspx?pgID=868

-- Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO, is a national consumer and community engagement initiative to improve care at the end of life. Brochures for congregations can be downloaded free or ordered at: http://caringinfo.org/Resources/Brochures.htm

-- The Duke Institute on Care at the End of Life provides an annotated list of other helpful websites: http://www.iceol.duke.edu/resources/index.html