Dr. Beth Piraino, NKF President
Currently dialysis patients who have a terminal illness that is unrelated to their kidney failure can choose to enter hospice care and still receive dialysis paid for by Medicare. However, under a proposal by the Centers for Medicare & Medicaid Services (CMS), this policy could change. That’s because CMS is proposing to expand the definitions for terminal illness and related care, which could effectively require hospice providers to pay for dialysis under their current payment even when the patient may be dying of another condition or disease unrelated to their kidney failure. However, the Medicare payment for Hospice is not enough to cover dialysis treatments in addition to other treatments terminally ill patients need. Therefore, it is unlikely that most hospice providers will cover dialysis care, leaving patients and their families to choose between giving up dialysis and entering hospice or continuing to dialyze, but give up the supportive care and psychological benefits that hospice providers deliver.
A recent study published in the American Journal of Kidney Disease highlights the difficulty patients and families experience when faced with the decision to withdraw from dialysis. The article also suggests that differences in decision making for withdrawing from dialysis may also be attributed to cultural beliefs and customs. This study is an example of how dialysis patients could benefit from the psychological support that hospice care can provide to patients and their families.
In comments to CMS on this proposal, NKF stated that dialysis patients should receive an exception from the CMS proposal and be allowed to have Medicare pay separately for dialysis treatment and hospice care. Doing so would provide the patient with a terminal illness with access to hospice benefits while also continuing to receive dialysis. End of life decisions are not easy for anyone involved, and CMS should not be implementing payment policies that force a patient to suffer unnecessarily.
Advocacy in Action 
I have DNR paperwork in case of stroke or heart attack to avoid part of these headaches i do not wish to be a financial burden this world is only temporary to start with a place to learn and to gain faith little more or less beyond that Average life span of dialysis patient is 6 years i know some have been on it for well past 20 years outside of tests for possible transplant i have been in hospital once overnight since diagnosed to get fistula installed and tunnel cath removed October i will be on dialysis 5 years.
I think this is stupid!!! My husband would have dies three months earlier. if they had stopped Dialysis. It gave him the chance to die at home. I am sorry if Insurance does not want to pay for it, but those three months were priceless to me and his son.
Removing dialysis equals increased fluid in the body, which in turn makes the patient swell often uncomfortably and makes breathing difficult and probably eventually impossible. As someone who has been there I can tell you that it is a scary feeling to not be able to get enough oxygen because you feel like you can never take a deep enough breath. Removing dialysis from a patient just because they have a terminal illness that they may live with for weeks, months or longer is cruel and may as well be considered euthenasia – except that euthanasia is supposed to be a painless process. This would be a very scary and uncomfortable way to pass for a patient who may be alert and know that they are slowly suffocating. Withholding dialysis form a terminal patient who is conscious is just wrong unless they request it. What’s next – lethal injection for hospice patients?
All Options should remain open and Medicare should NEVER be made a part of this criteria for anyone who requires treatment!
Patients and/or their families should not have to make these kinds of choices because of money! It is unfair and unethical to force this issue on them. America has the resources even if it lacks the heart to do the right thing for these patients! Do YOU want to make this choice for a relative or loved one in these situations? No! But you think nothing of making it for strangers you don’t know? Likely yes, in most cases. Both sad and hypocritical for many!
It should be paid for I been on dialysis for 34 years straight. And if I had a terminal illness I would what to keep having my treatments and my other care as well.
Truthfully, I hadn’t given it any thought until I read about it on your page. I do want treatment paid for of course, because of our inability to pay, and my advance directive says to try to save me if something so happen. Perhaps I’m being stingy for wanting to live longer, but I don’t think anyone wants to die if they can help it.
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tengo un hijo de 15 años que fue diagnosticado con insuficiencia renal cronica quisiera saber que opciones tengo y de que manera podrian ayudarme. soy de guatemala y aqui no hay buen servicio ni hospitales para pacientes renales y quisiera saber que puedo hacer gracias. mi correo es coinfisa2003@yahoo.es
Gracias por ponerse en contacto con la National Kidney Foundation. Nos sentimos apenados del diagnóstico de su hijo con la enfermedad renal. Lamentablemente no estamos familiarizados con el sistema de salud en Guatemala y no podemos proporcionar referencias para los médicos o hospitales. Le recomiendo que hable con un médico en su área para recomendaciones y más pruebas y tratamiento.
Para obtener más información acerca de la enfermedad renal crónica visite; http://www.kidney.org/sites/default/files/docs/11-50-0166_aai_patbro_aboutckd_pharmanet_nkf_span_jan08.pdf