Dying Should Not Be So Brutal

End of LifeIn an Op-Ed article in the NY Times, Ira Byock, MD, correctly details how brutal dying from a terminal disease is in this country. He cites the tragic case of a friend who fails to respond to conventional therapy for oncologic disease at a well-known Center of Excellence and the suffering he is going through. With conventional therapy failing he is offered a chance to enter a clinical trial or experiment to save his life. The author recommends Hospice care instead but if the patient chooses Hospice care he will be forced to forsake entering the clinical trial and turn his care over to the Hospice team. The author believes this is wrong and the patient should be able to receive comfort care and palliative care while still treating his disease. He goes on to make a list of sane recommendations regarding the future training of doctors and nurses so that patients and their loved ones will have the opportunity to be better informed about end of life issues.

I became exposed to Hospice in the late 1970’s early 1980’s when the Hospice movement consisted of caring angels of mercy , who at no cost to the patient or family provided comfort measures to the patient and support and counseling to the family. Hospice of Boca Raton met in a store front on Spanish River Boulevard off Federal Highway. It was staffed by volunteers from local churches, off duty paramedics, nurses, and community volunteers. They needed a medical director so I was asked to participate as part of a rotating group of physicians who donated our time to this worthy cause. Volunteers took a training course and devoted countless hours to providing bedside care and comfort to the sick and dying.

As one of the volunteer medical directors I attended care team meetings, reviewed care plans and signed for the prescription medications and narcotics needed to care for our patients. My time commitment was very structured and limited compared to the long hours the volunteer staff invested in providing comfort measures. We were paid nothing, expected nothing and worked with the patient, their loved ones and their doctors tailoring a care plan that fit each individual’s needs. We did not make them stop their treatments. We did not make them transfer their care to Hospice and away from their long time care team. In those days patients actually had a personal physician who knew them for years.

We were thanked and loved for our limited time investment far in excess to our contribution especially compared to those wonderful volunteers who performed the daily bedside and household care. This all changed when insurance and Medicare agreed to finance Hospice. At first we all thought the extra funding would now make it possible to provide service to many more individuals and pay for badly needed supplies and medications.

The first thing that happened is that many of the volunteers were dismissed and replaced with full time help. That included the volunteer physician medical directors. Medicare wanted full time people. Hospice became a business run by profit making corporations, hiring per diem help to go into homes instead of full time well trained Hospice staff. To be a patient in Hospice you were asked to relinquish your current doctor and medical care and transfer your care completely to the paid full time Hospice teams. In many cases patients were taken off their routine medications and over-medicated with narcotics producing a legal “Kevorkian-like” result even if the conditions did not dictate this approach. It became a big business, not a center for comfort and caring.

Dr. Byock’s article in the NY Times should be required reading for all families and persons over age 50. His suggestions should be discussed in our places of worship, places of education and especially in our medical school and nursing school curriculums. Dying from a painful incurable disease in America should not be this hard and brutal.

Medical Costs Rise as Retirees Winter in Florida

Healthcare CostsIn the January 31, 2015 edition of the NY Times, Elisabeth Rosenthal writes about the high numbers of tests performed on seasonal visitors to the state of Florida in the winter (as if seasonal visitors to Florida requiring health care are a new phenomenon). She cites a NY Times analysis of Medicare data released for 2012 showing twice the number of nuclear stress tests, echocardiograms and vascular ultrasounds for Medicare beneficiaries in Florida than in Massachusetts. She blames it on Florida cardiologists purchasing medical testing equipment for their offices and doing a large volume of tests to recover much of the income lost to a drop in reimbursement rates by Medicare to doctors for actually seeing patients, examining them and providing care. The article then goes on to discuss the increased number of tests in Florida in the last two years of a patient’s life compared to other areas of the country. She does admit that senior citizen rich population centers in NY, California, Arizona, South Texas and South Nevada have similar data showing high rates of testing than the rest of the country, but this is passed off as an afterthought. There are then a slew of anecdotal stories about individuals advised to undergo a procedure or test who declined and recovered nicely without it being done.

I have a suggestion for the NY Times, New York magazine and all the online purveyors of pearls of wisdom on health care. Suggest that your readers vacationing in Florida for the winter find a primary care physician (PCP). Find one who is willing to review the patients’ medical records from their northern physician and share clinical decision making on important issues with the physician(s) who know them longest and best.

For many years these prestigious periodicals have been suggesting that the patients’ only see a specialist. If the patients do not self-refer themselves to a specialist, their children often self-refer them to a specialist. Most specialty physicians are ethical, moral practitioners not churning out tests for self-profit. You can avoid the ones over utilizing at your expense by finding a well-trained internist or family practitioner who has no x-ray suite in the office, no nuclear stress testing equipment, no echocardiogram machines and no extensive in house laboratory. You probably won’t find that type of doctor if your physician is an employee of a hospital based health care system or Accountable Care Organization where the facility fee and incentives to over utilize are very strong. You won’t find that if you use the Emergency Room or a walk in center as your primary care physician because the same incentives exist.

You can find this dying breed of physician (dying because Medicare reimbursement for their services and influential periodicals have driven them out of existence) by calling the local county medical society or the local hospital medical staff offices and asking for a board certified internist or family practitioner who is not employed by the hospital or one of its large health care systems.

Consider a concierge or direct pay practice as well. The customer services in those practices, and additional patient time the doctors have, allows them to get the full story and communicate with those doctors who know you best rather than just shuffle you off for tests.  After all, time is the essence of quality, especially when it comes to healthcare.