With all the recent debate about health care policy reforms, it is important to keep the focus on the practical needs of patients and their families in dealing with an illness or disability, and simple steps that health care providers, employers, insurers and other payers, churches and other community organizations, and regular people can do to meaningfully help patients and their families effectively access and pay for care and meet other related challenges attendant to illness and disabilities.

No easy, one-size fits all cure exists to help patients and their families deal with illness or disability.  Paying for care is only a small part of the health care challenge for any patient and his or her family.  The good news is that health treatment and disease management advances increasingly are converting once deadly illnesses and disabilities into chronic conditions.  The challenge is that patients living with these conditions often survive with ongoing (often expensive) medical treatments, work-life adjustments and other continuous partial but imperfect fixes that come at great financial, productivity and personal costs to themselves, their families and society.  The government and its public policies can’t change this anymore than the patients, families, employers, friends and communities that live and deal with these patients.  Indeed, the process of reform and the confusion it will foster is likely to create new complications in the upcoming years.

Consequently, to make any real and meaningful difference in the empowerment of  patients and the mitigation of the financial and other challenges that patients and their families, health care providers, employer and other business and community leaders, health plans, insurers and others experience in dealing with ill or disabled person starts with recognition of basic realities of illness and disabilities and pursuing the many small practical opportunities to mitigate these challenges, including the following:  

No One Easy Fix; Just Many Small Ones

Being old or being sick (or having a loved one who is) stinks. Not everyone was born with a BMW for a body and even some BMW’s are lemons. Even for a car, there isn’t always a clear “evidence based” answer to the unavoidable “why me/us” questions every patient and their family must face.  However, the answers to these and other tough questions often are must less clear and more intractable for patients and their families:

• What’s wrong with this body?
• Can it be fixed and if so, how do I fix it?
• If it can’t be fixed, what do I do?
• How do I pay for the fix? How do I find the money and other resources?
• How do we keep working and keep pursuing the cure at the same time?
• I am scared, lonely, confused, tired, hurting, alone, uneducated, unemployed, etc.

Money only can do so much to fix or mitigate the experience of being ill, old or disabled and there isn’t enough money to pay for all the fixes that exist for those people with broken or aging body parts.  While dollars play a critical role in a patient’s ability to access certain resources, it can only partially answer these questions.  All patients and their families still struggle to deal with these intractable questions.

Communication & Understanding Key Tools

The best way to get Americans to make better choices about the health care they choose is to provide better communications and other tools to empower them with improved understanding needed to make better choices and better cope.  Misunderstanding and miscommunications in the system fuel much pain and inefficiency.

• When families and patients get good information that indicates that the $20,000 spent for a procedure will only cause a lot of suffering and expense to extend a life already suffering for another 48 hours, they usually chose quality of life over length of life.
• Studies show that physicians and the RNs working with them agree in less than 70 percent of the times about the care ordered and how to administer it. Communication elsewhere among health care providers further erodes cost effectiveness and quality.
• Government regulation and the tension that results from regulation and practices that break up health care teams makes this worse contributes to this problem. 

Better communication and understanding between health care providers and the patients and their families and friends that help the patients will improve quality and efficiency of care.

• All Americans need to be taught basic communication and coping skills to be better and more responsible health care patients, and effective health care buddies for their family and friends.
• Providers need to communicate effectively with patients, family members, payers and each other. Patients and families need to learn to take responsibility to insist on answers to the questions they have that are necessary to meet their care needs.
• Health plans, insurers and other payers need to communicate effectively with patients and their families, as well as health care providers about what coverage is being purchased, what is and is not covered, what must be done to qualify for coverage, care choices affecting coverage, and the availability of other alternatives when coverage is limited or not available.

Demographic Realities Ensure Inadequacy Of Funding

The aging population means that the gap between patients that need money for care and the available dollars to pay for care will continue to grow unless care is rationed in some way that limits or denies certain care to some ill, disabled or aging people.  Decisions about rationing by necessity require individual specific, personal decision-making. Just because the most health care dollars are spent in the last months of life doesn’t mean that these dollars are necessarily wasted. The question should be what quality of life was realized for the dollars spent.  This is a qualitative decision that is of necessity highly personal for each patient and his or her family.  It cannot be fully accounted for or decided based on actuarial and accounting curves. Many old and sick people are extraordinary functional, valuable and important to someone.

Personal Responsibility For Self & Neighbor Best Investment

The most overlooked opportunities for quality and cost improvements rest with the people in health care:

• The patients, their families and friends
• Health care providers
• Employers, churches, social organizations and other community organizations and resources that deal with patients and their families;
• Health plans, insurers, and others that administer care; and
• Others that encounter patients and their families.



Caring for ourselves, our families, our friends and others in our community is our right, our privilege and our job. The best opportunity to improve access to quality, affordable health care for all Americans is for every American, and every employer, insurer, and community organization to seize the opportunity to be good Samaritans.  The government, health care providers, insurers and community organizations can help by providing education and resources to make understanding and dealing with the realities of illness, disability or aging easier for a patient and their family, the affected employers and others. At the end of the day, however, caring for people requires the human touch.  Americans can best improve health care for ourselves, our loved ones, our friends and Americans generally by stop waiting for someone else to do it. Noone is better qualified to care about your loved ones than you.  Do what you can and celebrate what you can do.  Speak up, step up and help bridge the gap when you or your organization can do so by extending yourself a little bit.  Speak up to help communicate and facilitate when you can.  Building health care neighborhoods filled with good neighbors throughout the community is the key.

The outcome of this latest health care reform push is only a small part of a continuing process.  Whether or not the Affordable Care Act makes financing care better or worse, the same challenges exist.  The real meaning of the enacted reforms will be determined largely by the shaping and implementation of regulations and enforcement actions which generally are conducted outside the public eye.  Americans individually and collectively clearly should monitor and continue to provide input through this critical time to help shape constructive rather than obstructive policy. Regardless of how the policy ultimately evolves, however, Americans, American businesses, and American communities still will need to roll up their sleeves and work to deal with the realities of dealing with ill, aging and disabled people and their families.  While the reimbursement and coverage map will change and new government mandates will confine providers, payers and patients, the practical needs and challenges of patients and families will be the same and confusion about the new configuration will create new challenges as patients, providers and payers work through the changes.

We also encourage you and others to help develop real meaningful improvements by joining Project COPE: Coalition for Patient Empowerment here by sharing ideas, tools and other solutions and other resources. 

Other Helpful Resources & Other Information

We hope that this information is useful to you.   You can access information about how you can arrange for training on “Building Your Family’s Health Care Toolkit,”  using the “PlayForLife” resources to organize low cost wellness programs in your workplace, school, church or other communities, and other process improvement, compliance and other training and other resources for health care providers, employers, health plans, community leaders and others here If you found these updates of interest, you also be interested in one or more of the following other recent articles published on the Coalition for Responsible Health Care Reform electronic publication available here, our electronic Solutions Law Press Health Care Update publication available here, or our HR & Benefits Update electronic publication available here. If you or someone else you know would like to receive future updates about developments on these and other concerns, please be sure that we have your current contact information – including your preferred e-mail by creating or updating your profile here. You can access other recent updates and other informative publications and resources

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