If you’ve received a recommendation of hospice care from a hospital or care provider on behalf of a loved one, it may come as a complete shock that your loved one is dying—or it may come with a sense of relief that their suffering will soon be over.
Either way, you’ll undoubtedly have questions. What does this mean? What can they provide? What choices do I have? And, most of all, what can they do for my loved one?
In short, all hospices provide the same basic services to all patients. Medicare regulates that care and pays for it to ensure this. That doesn’t mean, however, that all hospices are the same. They may have different approaches to service, staffing patterns, and types of support services offered.
You can determine the difference and learn which is right for by noting how well they respond to you when you first call and their answers to the following questions:
- Is your hospice certified by Medicare and/or Medicaid?
If your loved one has Medicare and/or Medicaid, these services will pay for everything hospice provides—but only if that hospice is certified. If it isn’t, you’ll want to know this in advance.
If your loved one doesn’t have coverage through Medicare, Medicaid or private insurance, hospice will work with you to ensure that needed services can be provided.
- Is your hospice for profit or non-profit?
This is a touchy subject. By Medicare rules, all hospices have to provide the same services. And there are many websites (as well as individuals) that will tell you that there is no difference in the services provided.
Just like any industry, they will note, there will be the good and the bad. They may further state that you should rely on personal recommendations (see below) and/or how comfortable you are with the providers you meet.
That being said, a Washington Post analysis of hundreds of thousands of hospice records (as well as other studies) shows that there are major differences between the two.
As the Washington Post notes, “On several key measures, for-profit hospices as a group fall short of those run by nonprofit organizations.” This, they explain, is because hospice operators get paid a flat daily fee from Medicare for each patient. The fewer services provided, the greater the profit.
Their study revealed that the typical for-profit hospice:
- Spends less on nursing per patient—$30 per day vs. $36 per day for a non-profit.
- Is 22% less likely to have sent a nurse to a patient’s home in the last days of their life.
- Is substantially less likely to provide more intense levels of care for patients undergoing a crisis in their symptoms. In fact, non-profits provided 10 times as much care per patient as did for-profits.
- Is 22% more likely to drop out of hospice care before dying as opposed to 14% for non-profits. This is often viewed as a sign that patients were pushed out of hospice when their care grew too expensive, left because they were dissatisfied or the hospice failed in the admission process.
- What do others say about the hospice you are considering?
You may have chosen your current healthcare providers based on recommendations from their friends, family, co-workers and other acquaintances. This is certainly a great place to start in selecting a hospice.
However, there are also other ways to obtain additional information on the hospice providers you are considering:
- Many hospices ask family members to complete a brief evaluation of their services after the death of a loved one. You might ask for their most recent scores so you can see how previous patients and family members have rated their services
- State and/or federal regulatory agencies regularly survey hospices to assess the quality of care being given and establish corrective measures if the hospice is not performing adequately. Ask when the last survey was completed and if any deficiencies were noted. If there were, ask how they been resolved.
- Finally, Medicare also allows you to compare local hospices based on results from a national survey that asks a family member or friend of a hospice patient about their experience. Simply visit: https://www.medicare.gov/hospicecompare/
- How many people does your hospice employ and how many patients are you currently caring for?
Medicare requires physician participation, nursing services, home health aide services, social services, and spiritual care be provided by any hospice. As the numbers of these providers can vary greatly from one hospice provider to the next, it can be helpful to have an idea of how many each one is caring for—which as a direct impact on how much care your loved one will receive. Ideally, a hospice nurse or nurse practitioner should manage a caseload with no more than 12 patients.
- Are your RNs and/or MDs certified in palliative care?
Both palliative care and hospice care provide comfort. The difference is that palliative care can begin at diagnosis, and take place at the same time as treatment. Hospice care begins after treatment of the disease is stopped when it is clear that the person is not going to survive the illness.
While not having this certification doesn’t mean the hospice staff can’t perform their roles well, it may be an indication of a greater understanding of the disease process and a greater commitment on their part.
- How rapidly can I expect your staff to respond in a crisis?
While hospice care can be provided in a variety of locations—from the patient’s own home to an assisted living, nursing facility or hospital, the actual location of the on-call staff is particularly important.
If assistance is needed at 3 AM on a Sunday, where would that person come from? How long would it take for them to get there? What happens in the event of an emergency or bad weather? Some hospices offer limited in-home support on nights and weekends, while others are able to send someone out no matter when a crisis occurs.
Although a nurse may be the best person to handle the situation, a physician, social worker, chaplain or another member of the team may be more appropriate. Ask if all members of the team are available in a crisis situation during nights and weekends.
- Will the hospice create a care plan for my loved one?
If so, ask if you can review a sample care plan. Then ask:
- Will ours be developed with input from both myself and my family?
- Will it be written out with copies given to everyone involved?
- Does it list specific duties, work hours/days, and the name and telephone number of the supervisor in charge?
- Is there anything currently being done for the patient that the hospice would not be able to do? The American Cancer Society notes that, “Some hospices will not cover things like dialysis, total parenteral nutrition (TPN, or intravenous feedings), blood transfusions, or certain drugs. But some hospices do allow you to add hospice care to your current medical treatment. Find out how the hospice would handle your current treatments before committing to their services.”
- How will the hospice manage any new health problems that might be curable, such as pneumonia or a urinary tract infection?
- Will it be updated as the patient’s needs change?
If not, ask why not. If you’re not comfortable with the explanation, that’s all the more reason to talk with another hospice provider.
- Does your hospice require a designated family primary caregiver?
If so, you’ll want to learn what their responsibilities are. Then ask:
- What help can the hospice offer in coordinating and supplementing our family’s efforts or filling in around job schedules, travel plans, or other responsibilities?
- If the patient lives alone, what alternatives can the hospice suggest?
- How many volunteers do you have and what services do they offer?
The Medicare law that defines hospice care requires that volunteer hours equal at least five percent of the hospice provider’s total patient care hours. That was done to ensure that along with maximizing healthcare resources, volunteers would keep hospice providers community-oriented, as well as patient-and-family focused.
This is important to you as volunteers can provide a variety of services including friendly visits, light household chores, running errands, personal care, etc. If you think a hospice volunteer would be helpful to you, ask what services they can provide and how quickly one can be assigned to help meet your needs.
- What options do you offer for inpatient care?
If your loved one is being cared for at home, they may develop complications and/or your family may need respite. Hospice providers may have their own private inpatient unit or lease beds in a hospital or nursing home. If they do offer inpatient hospice, the American Cancer Society suggests you ask:
- Where is such care provided?
- What are the requirements for an inpatient admission?
- How long can a patient stay?
- What happens if the patient no longer needs inpatient care but can’t go home?
- Can you tour the inpatient unit or residential facility?
- Which hospitals or nursing homes contract with the hospice for inpatient care?
- What kind of follow-up does the hospice provide for inpatients?
- Does the hospice provide as much nursing, social work, and aide care for each inpatient as it does for those at home?
- Patient’s rights and responsibilities
- Does the agency explain your rights and responsibilities as a patient? Ask to see a copy of the agency’s patient’s rights and responsibilities information.
NOTE: If a hospice has constructed inpatient hospice facilities of their own, they can charge room and board fees to increase their profit margins or decrease their losses.
As a result, some hospices may attempt to manipulate patients into their own facilities, even when the patient wishes to remain at home. You have the right to make your own decisions as to whether your loved will remain at home or transfer to a facility.
- Do you provide respite care?
Caring for a loved one at home with a serious illness can become exhausting. In addition to providing hospice care in your home or at an inpatient care facility, some hospices can offer respite care for up to 5 days outside your home in an inpatient bed or continuous care at your home for brief periods. You’ll want to learn what options are available to you.
- Do you offer any extra services beyond those required?
While Medicare does not require them, many hospices provide additional services to improve the comfort of a patient. These could include services such as massage, music, art and/or pet therapies
Studies have shown that music therapy helps relieve pain, agitation, and depression while massage therapy can reduce pain intensity, morphine requirements, and even hospital admissions in cancer patients.
Special extras like these make each hospice unique and establish a personal fit to those entering hospice. In fact, it could well be the special “extras” that may help you decide which hospice is right for your loved one.
If these services are something you’re interested in, don’t just assume they’re being offered. One recent survey showed that only 29% of hospices reported offering them.
- How will any concerns I have be handled?
Finally, you’ll want to know what the process is for sharing concerns with hospice staff to make sure they are addressed. Also, is there a process for escalation if your concern isn’t adequately addressed?
Hospices all provide the same basic services to patients but that doesn’t mean that all hospice providers are the same. By asking the right questions as you journey along the gray mile, you can make the right choice—both now and after your loved one has gone along ahead of you.