Asking the right questions

Who will act as the overseeing physician---the doctor who has been handling my loved one's brain tumor care up until now or one of the hospice agency's own doctors?

If my loved one's doctor is willing to remain on call to us during the hospice period, is that something you would be willing to work with?

If it can't work out that way, can you tell me a little something about the doctors you mainly use (their experience, etc.)?

(Note: It is very unlikely that a hospice doctor would ever make a visit to the house or even to an inpatient facility at which he or she does not normally call. The doctor is called upon by hospice nurses in cases when a new prescription or refill may be necessary and he would not normally have any contact with the patient or family directly. Also, it is likely that the hospice doctors are general practitioners rather than specialists with any direct brain tumor experience. If the patient's own brain tumor specialist is at all willing to remain on call to the family or to the hospice nurses, this can be a wonderful bridge into full-time at-home palliative care. We were lucky enough to have my father's neuro-oncologist insist, at the time he made the hospice referral, that he would be the one to call under all circumstances. Things couldn't have gone smoother, and he occasionally called us personally to check in.)

How often could we expect a hospice nurse to come out to the house?

(Two to three times a week is fairly standard when the situation is status quo, and otherwise as needed. Usually, they check vital signs, note any new changes, and linger in order to answer any questions the caregiver might have. If the nurse has any feeling about how much time remains, he or she will share this information with you.)

Who would I call if I had a late-night question?

Is this an answering service or a hospice dispatcher? How long, typically, might it take for a return call? If it was necessary for a nighttime on-call nurse to come out to the house because of something serious, how long would you estimate that this would take? (A reasonable delay for a return phone call would be 15-20 minutes. A reasonable delay in having a nurse appear after phone contact would depend on the distance between her home and yours, but an estimate can help you understand the potential for worst-case scenarios "just in case.")

What kind of equipment do you feel would help us in this setting? How long will it be before this can be set up?

(This assessment should be handled at the first visit from hospice. The volunteer or nurse will review the home and the patient's current level of function, and from there will recommend certain aids, like an adjustable hospital bed with an air mattress, a bedside commode, a wheelchair and ramps, a Hoyer lift or a lift belt, and incontinence supplies---whatever is called for at the current time, with additional supplies being offered as needed whenever the situation changes. These things should typically be delivered by another volunteer within a day or two. Other, general advice may be offered about making the house or room more convenient for caregiving.)

What other types of volunteers might we expect to have access to? What kind of schedule is typical for them?

(A bathing aide might come out once or twice a week perhaps. A social worker should come fairly soon into the new arrangement, to greet the patient and family and begin that important rapport; after that, visits might be once per week unless they are needed more often. A general volunteer, such as would sit with the patient while the caregiver ran out or would do basic errands, might come once a week if requested. A chaplain works in a general sense like a social worker, and is available if the need or desire exists; if the family has a request for a specific religious contact, the chaplain can assist in making that connection. The schedule is worked out between the caregiver and the various volunteers themselves and is generally flexible.)

Is it possible to specifically request a hospice nurse who has had experience with end-stage brain tumor patients in the past?

(New cases are generally assigned to the nurse with the lightest load at the moment, so it may be just luck of the draw, but it can't hurt to ask.)

What is the feeling of your agency toward continuation of Decadron use in end-stage brain tumor patients?

(Schools of thought vary on this, but it is good to know ahead of time if the caregiver and the selected agency agree philosophically, or if the agency is at least willing to support the caregiver in this personal decision.)

Will my loved one continue taking all of the current medications as usual?

(Probably yes, for as long as he or she is able to do so easily. The exception will be that chemotherapy will likely end, as this form of medication contradicts the concept of hospice as palliative, or comfort, care.)

How will hospice care work with my insurance plan? Is there anything I should know about that would not be covered?

(Double-check to make sure that the agency which was referred participates with your plan, if that is a concern. Some larger cities have more than one hospice agency; one may be on the plan, one may not be [as is true for some hospitals]. The representative you meet initially may not know your plan particulars intimately but will be able to generally discuss this with you.)