Question: My 86-year-old mother was diagnosed with terminal lung cancer early this year. She decided not to receive treatment other than pain control because she had been on dialysis for six years due to end-stage kidney disease and was totally worn out.

Her cancer doctor told us he expected that she would live three to four months, referred her to hospice, and sent her home. We then got word from hospice that they could not take Mom unless she agreed to stop dialysis. If she stops dialysis, her kidney doctor says she will be dead in ten days. We have tried to contact the Medicare people, but can’t get a straight answer. So Mom is continuing dialysis to stay alive, but is not getting hospice pain management for her cancer. Can you tell me what to do? This is ridiculous.

Answer: “Hospice’ is a specially designed type of care geared to making the dying process as comfortable and pain-free as possible using what is called “palliative” or comfort care. Hospice can’t provide “curative” care – that is, procedures and care that promote recovery. To be eligible to receive hospice, a physician must certify that the individual is terminally ill with six months or less to live, and the individual must sign an election form stating that he or she understands that the care to be provided will be for comfort, not for cure, and opts out of the curative provisions of the Medicare program.

Once a person qualifies for hospice, Medicare will provide coverage for “reasonable and necessary” services to provide comfort care and to manage the effects of terminal illness and related conditions. Therefore, your mother and your family – and any individual with a modicum of sense -- could reasonably expect that your mother would be provided pain management for her cancer and dialysis for her kidney disease until she died. Right? Wrong!

There is neither rhyme nor reason when it comes to dealing with the bureaucracy known as Medicare. Dialysis is the procedure by which waste and excess fluids are removed from the bodies of individuals with end-stage renal disease, and is clearly not a cure for kidney disease, but it is a way to keep such an individual alive. Crazy as it may sound, however, Medicare is not covered under the hospice umbrella of benefits, even though dialysis is not considered “curative.”

Why? Hospice providers receive a “per diem” or daily rate per person to supply care to terminally ill Medicare beneficiaries. From this daily rate, the hospice must provide all care, and the bottom line is that the daily rate paid by Medicare is insufficient to pay for dialysis.

Therefore, even though your mother is otherwise eligible to receive Medicare coverage for hospice, she – and others with terminal illness who receive life-sustaining, but not curative treatments – will not receive the benefit because of the structure of the Medicare payment scheme.

Who to call? For starters, you may want to contact The Centers for Medicare & Medicaid Services (http://www.cms.hhs.gov/), but that will probably be a waste of time.

We suggest that you call, write, and e-mail your Congressman and Senators – and get your friends and neighbors to do the same. Tell your elected representatives how the bureaucracy is playing ping-pong with your mother’s life and welfare. Why should your mother be required to live out the rest of her life in pain in order not to die an agonizing death by stopping her dialysis? Given the fact that your Congress and President stepped up for Terri Schiavo, surely they are interested in the helping tens of thousands of Americans like your mother who are being trampled by the system they created.