I want hospice, but I want to continue treatment.......

tewdles, RN · Jan 5, 2010

can patients receive hospice and still continue to see all 5 of their "regular physicians?" i signed up a patient over the weekend, in late 50's, dx with renal cancer 4 yrs ago--this has mets to brain and lung. has had several wedge procedures to remove clots and tumors in lungs, most recently had hydrocephaly so now has a shunt......... patient is passive an wife makes all decisions. referring hematologist has turned over primary care to our medical director--but wife wants his regular "5" physicians to remain in the loop--this includes hematologist, neurosurgeon, urologist, internal med, an a holistic medicine practitioner. wife will continue to take patient to each physician, she is keeping ct an mri appointments and only signed up for hospice as "the marketer said you provide more services than home health can." my director said wife needs to be "educated" about hospice--in other words let her know that pursuing ct an mri scans are not necessary. true this. wife talks that patient is going to get better and they won't need hospice "for long". evidence of denial. patient was ordered by hospitalist maxide 25mg daily, an wife said to me "no, that is not what his internal med doc has him on, he is only on 12.5 daily (even though his bp is 140/100 most days). she won't increase without internal med doc verifying.............................
i agree that wife needs to understand that the hospice benefit will pay for visits to/by the physician managing the hospice care and the medical director, assuming those two are different. the visits to the urologist, neurosurgeon, hematologist, etc will be her financial responsibility.
legally, can we tell the poa that she can't take her husband for ct scans and mri appointments. diagnostic tests such as the ct or mri are not part of the hospice poc and will, therefore, not be paid as part of the hospice plan of care. she may continue to seek that level of care but it will be her financial responsibility.
i believe the ct scans are to see if the shunt is working properly. explain that his symptoms will indicate if his shunt is working properly and it will be less stressful for both of them to avoid those type of procedures. does anyone have any links to regulations to what we must continue to provide even when patient is on hospice. btw: it is obvious that i work for a for-profit agency. i am not sure that there are any services your agency must continue to provide that are outside of palliation and comfort. that is, afterall, what hospice is all about. i doubt that your for-profit agency is going to want to foot the bill for these md visits, cts, mris, etc out of the routine hospice per diem insurance payment. additionally, you set the agency up for problems by okaying these tests...what if the ct shows that the shunt is marginally functional? are you going to pay to have it surgically replaced?
imho-i feel bad when marketers write checks that we nurses can't cash. patients and families are told all that we can provide, but it feels like this is seeking a cure, not comfort. then the nurses are told to educate----now that they are signed up an on service-now the nurse has the responsiblity to inform them that we won't pay for the ct/mris....it just seems like "bait an switch." it just feels wrong. this is part of the reason that i believe that hospice nurses or msws should be providing the initial information to potential hospice patients and families, rather than marketers (liaisons) who are primarily interested in numbers rather than care delivery. i also will not admit a patient who has goals or plans which are not hospice appropriate. this has really annoyed at least one of my hospice employers, however, to my way of thinking, there is no good served by bringing someone on to service who is not accepting of a hospice plan of care. all that is generally accomplished by admitting such patients is to really irritate a family, cause poor word of mouth advertising, and create a bunch of work and heartache for the staff assigned to the case. are there any websites that link to what patients can continue when still receiving hospice benefits?
http://www.medicare.gov/publications/pubs/pdf/02154.pdf

thank you for your assistance.

atlanta rn

my recommendation would be to invite this spouse to an interdisciplinary team meeting where the team can discuss the nature of her husbands condition, the prognosis, and the hospice plan of care. this would be a good way to communicate to her that while she is welcome and encouraged to participate in the plan there are limitations to what a good hospice plan may incorporate. in the event that the spouse is not willing to come to a meeting, i would recommend a meeting in the family home with the case manager, spiritual care (if possible), and msw. wouldn't it be great if that marketing person could join you?

bottom line is that either no one educated this couple on the basics of hospice, or, the wife is in a state of denial and is not accepting what she was told. if it is a question of education it will likely resolve with the above action. if it is denial you will serve everyone well by encouraging her to revoke the hospice benefit when you refuse to continue the plan of care according to her non-hospice agenda.

it is too bad, but we cannot help people who refuse to accept the terminal nature of their disease and continue to pursue every avenue to restore health rather than to promote dignity and comfort. you and i both know that this man has a good chance of dying a uncomfortable and undignified death in the local hospital icu or er because of his wife's state of mind. i hope you are successful in helping her to "turn a corner".