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?
I’ve experienced at times a patient who needed full time care living alone who appeared to remain stronger and independent a longer period of time because of the need for self care. The necessity to remain responsible may encourage greater strength and focus for with more satisfaction and self direction. It’s also good to know that inpatient care may be available if a patient declines to the point that even a caregiver would be unable to care well for patient. At that time assistance should be available to consider alternatives.
I agree. Independence is a very big part of a patient’s life and it should be considered when a decision is made about their well being. Thank you for sharing your thoughts!
I tried to get information from two hospices last summer, just to be prepared for the future. Both seemed to be saying that a patient must have full time care at home or else be in a nursing home. The ALF where my dad stays doesn’t permit hospice there. They don’t want the responsibility unless the family hires 24 hour nurses to be present. Thus my conclusion was in my area, dad would have to go into a nursing home if he needed hospice. I still want to avoid the nursing homes but the local hospices that I talked to only had inpatient care for respite or the last 2 weeks of life. Dad is fine so far, but in his mid-90’s with Alzheimer’s and some chronic conditions. He was in a nursing home for several weeks and it set him back a lot socially. He just stayed in bed most of the time. I really want to avoid a nursing home in the future, but I don’t know if that will be possible.
In my practice I have come across a few ALF that will allow hospice in their facility without you having to hire a 24/7 caregiver. If you haven’t already, you may want to look a little outside of your area for one of those. If your father’s Alzheimer’s disease is so advanced that he would not be able to call 911 should he need to, then he should have a caregiver 24/7. But if he is cognitively aware and could make that call, then I don’t see why a hospice would decline services. Good luck with your father.
Thanks. This is an important issue to consider ahead of time.
My Dad was a hospice pt in 2006-2007, and he lived alone except at the very end, when we moved in during the last 2 weeks of his life. He benefited so much from hospice care, he was able to remain independent with his caregivers providing support. Fortunately, his caregivers all lived within 5-10 minutes of his home, so we had the blessing of sharing his end of life care,
It must feel good knowing that you gave your dad the independence that he wanted and needed. On the other hand at one point you must have worried about his ability to do things on his own at times. Thanks so much for sharing.