Rusty, a Facebook friend from the “right coast,” messaged me about a family concern. One of his uncles has a life-limiting illness, and the doctor recommended that it was time for hospice. Since the uncle’s adult children weren’t sure what to ask when hospice arrived to evaluate their father, they invited their cousin Rusty to help.
The question from the cousins was Rusty’s question to me: what should we ask?
With a little editing, this was my response . . .
So sorry to hear about your uncle. Such an overwhelming time for any family. You should be honored your cousins invited you to be with them and to take some leadership in this. It’s an honor that also likely feels a bit scary.
I won’t raise every possible question, but I’ll suggest a few.
First, make sure your cousins—along with other primary caregivers, and your uncle (and aunt?)—are comfortable with the hospice. Most communities have several hospices (some for-profit, some non-profit) serving the area. You can choose one over another, all will have similar basic services. Your family should agree that a hospice “feels” right. Yup, that’s subjective and hard to quantify, but trust your gut. Last year my family said “No” to one hospice for my Mom because the nurse who did the evaluation seemed unprofessional. First impressions do matter.
Second (still not one of my questions), unless this hospice has an in-patient facility (many don’t), all the care will be done at home (or a place like a skilled nursing facility). Hospice staff will come to the home/facility on a scheduled basis. For example, the nurse may visit 1-2 times a week, a home health aide 2-3 times a week to bathe and tend to the patient, a social worker once a week for emotional support and to help connect the family to resources. You can choose to have a chaplain for spiritual care. (And chaplains honor a patient’s faith perspective; no guilt or proselytizing!) The staff schedule will be flexible, based on the patient’s condition and needs. But family members and/or hired in-home caregivers are needed for full 24-hour at-home care. Hospice won’t “take over” everything. Instead, hospice assists so that a patient can stay in her/his home. And a hospice patient at home should never be alone. Families need to create schedules to be with their loved one, and to have some “breaks.”
Is there one nurse case manager assigned to a patient? (It’s helpful to know there is one primary staff person in charge of the hospice team.)
You should have 24-hour phone access for questions and concerns. Who answers the phone at hospice after-hours and weekends? In other words, at the “odd” hours, how quickly will you be connected to a nurse who has access to the patient’s chart and can make decisions about care needs? Some decisions for care can happen by phone; some may require an unscheduled visit.
How quickly can medical equipment (a hospital bed, commode, etc.) be delivered to the house?
What are the options for respite for the caregivers? People might need a break from caregiving for a day or two . . . find out what this hospice will do.
What costs will the hospice benefit cover? What should a family anticipate paying out of pocket? (Medicare and private insurances typically cover substantial amounts of hospice care, but don’t assume “everything” is paid for.)
Does the hospice you’re considering have an in-patient facility? As noted, many don’t. But some families, while they want to keep the patient at home as long as possible, don’t want the loved one to die there. Are there options?
Does the hospice physician do home visits?
Does the hospice have trained volunteers to be at your home? A volunteer can stay with the patient while a caregiver grocery shops or goes to a doctor’s appointment.
Lastly (though not lastly*), ask questions as the hospice staff makes his/her presentation. If you don’t understand something, or if one of your cousins looks puzzled, seek clarification. The representative from hospice is there to help you, not add to your confusion.
Hope this helps, Rusty.
*There are more questions that could be asked. Indeed, when I revised this note to Rusty, I added several that weren’t in my original response. An EXCELLENT place for information is MOMENTS OF LIFE, a website sponsored by the National Hospice and Palliative Care Organization.
(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized. But I did get Rusty’s permission to post my note to him…)
Image from here.