Very different congressional hearings?

by Gary Peterson

It remains to be seen if the ProPublica articles on dialysis will result in congressional hearings.  The last ones were held in 2000.

Although many of the links on this page no longer work, see this running news summary from 2000-2003. It details GAO reports on dialysis in 2000 and 2003 and the congressional actions that resulted.

If congressional hearings are held again, I believe that in order to be more effective, they should be much more personal this time.

Congress should have the large dialysis organizations’ CEOs, prominent physicians, and CMS officials testify as to the dialysis therapy they would choose for themselves, as well as the reasons why. They should then explain why over 90% of patients receive therapy that they would not accept for themselves. Congress, patients, and the public could then decide who or what is at fault.

I believe Congress should also unearth the numerous financial conflicts of interest that exist for many healthcare professionals that are usually entrusted to act in the patients’ best interests.

Congress should hear from patients who have experienced both standard, in-center treatments and then have switched to individualized care based on their health and life goals.

I believe CEOs, nephrologists, and CMS officials should always be somewhat fearful of being called before Congress to explain the differences between their personal choices and the care that patients actually receive.

Comments

[Bill Peckham]

Patient Centered care has to include the care that is delivered when the patient isn't engaged. The fact that higher quality dialysis options are available to motivated and/or lucky individuals can not excuse the suboptimal nature of the all too common default dialysis option: 3 hours, three days a week.

No one in the business would choose that option.

[Roberta Mikles]

I can not get out of my mind that statement of Dr. Parker and would welcome the opportunity to also ask our legislators, providers, physicians as well as those providing direct care if this is the care they want to receive?

It is imperative that our legislators, CMS, etc. hear from those patients who have NOT received individualized care and how that has affected their lives. They should also hear from patients and/or families of those who have experienced negative outcomes that have affected them both emotionally and physically. Legislators, CMS, etc., need to be more cognizant of the fact that many patients have suffered emotionally due to intimidation, retaliation, etc and many physically due to lack of individualized care.

In the six years I sat with my father at dialysis, I watched many patients experience cramping, nausea, etc because they had too much fluid removed where if there were to have had treatments, more often, or at home, they would not have experienced such. This is just one, tip of the iceberg example of individualized care.

Many of the surveys - facility inspections, on our site support the lack of individualized care.

Roberta Mikles RN
Dialysis Patient Advocate
www.qualitysafepatientcare.com