How can we convince Mediare that facility-based hospice care is necessary and should be covered?

Eldo asked...

Recently I had a elderly parent diagnosed with terminal liver cancer. Hospice entered the picture and provided visits a couple time per week by a nurse and person to help with personal hygiene. A person was also hired by the family to help in preparing meals and making sure that medications were taken.

Things changed rapidly where 24-hour assistance was required. Hospice suggested that they be placed in one of their facilities where their needs could be meet. They admitted them for nausea, which Medicare would provide payment for, informing us that if their condition was upgraded that Medicare would no longer provide payment and it would fall on the patient. After four days they were upgraded, however their condition had gotten worse. They still suffer from nausea but now are unable to swallow the medications. The pills have to be crushed, dissolved in water, placed in a syringe and placed between the gum and cheek to be absorbed. They are unable to feed themselves, turn in bed, get out of bed to use the restroom, and have become lethargic. How can this be considered stable and ineligible for Medicare payments? Is there any course of action that can be taken?

Expert Answer

Hospice as covered by Medicare can be a tremendous help to both a patient and the family, but it's not intended to provide long-term inpatient care. Instead, it's meant to allow a person to be as comfortable as possible at home during the final stages of a terminal illness, with only very short stays as an inpatient when necessary for the patient or family caregiver.

There are only two circumstances when Medicare will cover inpatient hospice care. The first one, which seems to have been applied in your parent's case, is when the hospice team is unable to provide the patient with sufficient relief from pain and discomfort at home. In that case, the patient is placed in a hospice facility in order to provide the relief -- such as from intense pain or nausea -- that hospice couldn't manage in the patient's home. During this period of inpatient care, the patient pays nothing extra. Once the pain or discomfort is stabilized -- not disappeared -- the patient is "upgraded" and moved back home. This doesn't mean that the patient is then in better condition; it only means that the particular problem for which they were admitted as an inpatient can now be addressed at home. In your parent's case, once hospice determined how it could deliver pain and other medication despite the nausea, that meant that your parent could return home, even though overall your parent's condition was worse.

There's another, different part of Medicare hospice coverage, called respite care, that also might allow your parent to spend some time as an inpatient in the hospice facility. Respite care is intended to give you or other caregiver a break -- a "respite" -- from the exhausting job of taking care of a dying family member. It doesn't depend so much on your parent's condition as on how long you've been caring for your parent. If you or another family member has been caregiving your parent for some time, you can ask the hospice to arrange for respite care, during which your parent will be moved to an inpatient hospice facility. This respite period may only last for five days, however, and your parent will be responsible for 5% of the amount Medicare pays the hospice for each day of inpatient respite care. If your parent's overall hospice care continues for several months, the hospice can provide you with another 5-day respite period.