All [hospices] are all [sic] bound by the Medicare guidelines for payment and care.
This statement is not accurate. In the U.S., hospices and hospice professionals are regulated by the states, not by the federal government. Whenever a health care worker says that a service will not be provided because "we have to follow Medicare guidelines," the proper thing to do is to put the person making the false statement into a headlock and firmly administer noogies upon their skull until they swear on their grandmother's grave that they will never say those words again. According to sections 1801-03 of the Social Security Act of 1965, which established Medicare, that program does not regulate the practice of medicine or the manner in which medical services are provided, and cannot preclude any State from providing, or any individual from purchasing or otherwise securing, protection against the cost of any health services. So while there are many state regulations that adopt certain Medicare guidelines as "floors" of quality medical care, I'm not aware of any state that adopts any Medicare guideline as a "ceiling" that would preclude the provision of care required by the state's standards. Accordingly, the statement "We are bound by Medicare guidelines" is not only a hospice myth, but it is a dangerous myth that pervades the entire U.S. health care system. Again, noogies should be firmly applied to anyone who repeats this myth.
And as for payment, Medicare guidelines are binding only on Medicare patients. For non-Medicare patients, Medicare payment guidelines are inapplicable and irrelevant.
What we do not do is provide 24/7 care until the person is needing more care for acute symptom management.
If palliation of symptoms relating to a patient's terminal illness requires 24/7 care, a hospice is required to provide it. Period. That is the rule, and there are no exceptions, qualifications, or limitations. While it may be true that this care will usually only be required when symptoms are acute or severe, there are certainly hospice patients--including some ALS patients--who require 24/7 care on a routine basis. To make any statement suggesting that necessary palliative care will not be made available violates both the letter and the spirit of the law, which is deliberately written in a way that avoids any such limitations so that every hospice patient's care needs can be assessed on an individual basis.
Now, it is true that Medicare payment guidelines, which require a Medicare patient to be categorized as needing either "routine" or "acute" care for purposes of establishing a per diem rate, effectively make providing routine 24/7 care for some ALS patients into an unfunded mandate. But it is still a mandate, meaning the hospice is required to provide the care, even though it is provided at a financial loss. In theory, this loss is made up for by having other patients who require less care, but in practice, most hospices improperly place limits on the level of care they will provide to patients. As a social worker who is interested in helping ALS patients, one way you could help is to petition CMS to consider the needs of ALS patients when they revise their funding guidelines, so hospices won't have to take such a severe financial loss when they have a patient who requires 24/7 care on a routine basis. CMS used to pay hospices enough to make providing this care profitable, so it is clearly feasible to fix the flaws in the current funding structure.
For non-Medicare patients, this funding discussion has no relevance. The hospice has the power to negotiate a fair payment structure with the patient's health plan, and money should never be a reason to limit the patient's care.
Patients are eligible for hospice care with 6 months to live if their disease process continues its natural progression.
This is not always true. There are some health plans, as well as some state regulations, that have more liberal eligibility requirements. In California, for example, patients are eligible for hospice when their life expectancy is 12 months, not 6. Medical Mutual of Ohio does not have any set time limit for hospice eligibility. As indicated in my original post, every patient should carefully research their own plan's eligibility requirements. When hospice workers tell PALS they are not eligible until they have a life expectancy of six months, they are perpetuating a myth that can lead to unnecessary suffering.
[Aide services] can be up to 5 days per week for a max of 4 hours per day. That much time is usually rare, but an ALS patient may need that amount.
If palliation of symptoms relating to a patient's terminal illness requires more than 4 hours per day of aide service, a hospice is required to provide it. Period. That is the rule, and there are no exceptions, qualifications, or limitations. In our case, health regulators determined that one aide visit per day was insufficient for my wife and ordered the hospice to provide twice-daily three hour aide visits, for a total of six hours per day, because that is what was necessary in her case. It really doesn't help people on this forum to tell them about ceilings and limits to hospice care, because there are no ceilings or limits other than what is needed in any individual case.
Care plans are individualized and should reflect quality of life care for patient and family. We try to be prudent and work to assess what may be ahead and have a plan in place for this.
Yes! Yes! Yes!
