A debatable issue – Is it mandatory for hospice patients to have caregivers at home?
By Patty Ayers
You’ve been through the emotional process necessary to make the decision for hospice care with your loved one. Imagine if when you said “yes” to hospice, the agency you were considering said “no.”
Apparently, 12% of hospices nationwide do say “no” when the hospice patient doesn’t have a caregiver at home 24/7.
After reading the recent NPR article Why Some Hospices Turn Away Patients Without Caregivers At Home, I’m left with mixed feelings of confusion and frustration. I can say with the utmost certainty that the hospice I work for does not turn away patients who do not have adequate caregivers at home! I can also tell you that I have been assigned many patients who did not have a caregiver at home or had a caregiver who was elderly themselves, had a substance abuse issue or the home was “unsafe.” Of course these cases were much more challenging than most on my caseload, but it comes with the job of hospice social worker.
When one of our patients lives alone, we add additional means of monitoring them, such as wearable alarms to alert us if our patient falls, for instance. We can work with the patient to find a way to have home health aides stay with them on a schedule that makes sense to all. Hospice volunteers visit. The hospice team schedules their visits in such a way that the patient has more regularly spaced visits.
If you are told “no” from a hospice because your loved one lives alone:
- Call another hospice. The hospital or physician who refers you to hospice will offer a list of local agencies, and you are free to call any or all of them to find a good fit for your loved one.
- Ask the hospice how they will manage your loved one’s care without live-in caregiving available. Be comfortable with their answers before committing to using that service.
Remember: if a patient is cognitively aware and physically independent, they have a right to stay home alone even if they are at risk of falling. Even when a hospice patient is moved into a family member’s home, there are times when the patient must be left alone—even if it’s for a brief period. Hospice families do wonder how anyone could go through hospice care without an able-bodied caregiver present, but it can work.
My main problem with “not accepting” a patient because they have no caregiver, whether the patient is cognitively/physically impaired or not, is that this family still needs assistance with helping their loved one die with respect and dignity, which should be a part of any hospice’s mission. It would make life easier for so many families if the hospice benefit could include continuous care before the patient is at the very end of life. What do you think?