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Family Reluctance for Hospice: Keys to Overcoming Stigmas

“When does Mom get the black pill?” Families sometimes ask hospice providers this type of question—mistakenly thinking that hospice is a form of assisted suicide—even though hospice services were introduced in the United States more than 40 years ago, says Rick Russell, MBA, BSN, RN, CHPCA, president/CEO of Hospice of Northwest Ohio in Perrysburg, OH. “Several weeks ago, I heard the question framed as, ‘When do we get the shot?’ This and other stigmas about hospice still exist among residents and their families.”

Nursing home management and staff stigmas occur as well, says Russell. “Since the COVID-19 pandemic began, some nursing homes that are struggling with census tend to hang onto terminally ill residents rather than refer them to hospice,” he points out.

“This approach ties into the common stigma that a hospice referral means that the resident will only be there for another week or two,” explains Russell. “However, studies have shown that hospice can help people live longer—sometimes significantly longer. That is the message that needs to get out. These residents can stay in the facility if they choose, but have an improved quality of life and often an improved length of life. That’s a great combination.”

Another common stigma is facilities wanting to cap the number of residents on hospice to avoid “sticking out” or “sending up a red flag,” points out Russell. “However, every state surveyor and accrediting body that I have ever interacted with has said that a strong hospice census is a good indication that you are referring residents at the appropriate time—and keeping a better eye on your residents’ functional status and decline.”

In addition, no matter how many or how few residents are on hospice when state surveyors arrive, a standard Long-Term Care Survey Process (LTCSP) survey includes one resident on hospice for review in the state survey team’s initial pool to determine the need for further investigation if at least one resident on hospice is listed on the completed facility matrix (CMS-802), according to the LTCSP Procedure Guide. Further, stigmas that prevent residents from being referred to hospice timely can have a negative impact on MDS-based and claims-based quality measures in the Nursing Home Quality Initiative (NHQI) and the Skilled Nursing Facility Quality Reporting Program (SNF QRP). Note: See “Hospice Impacts the QMs More Than You May Think” at the end of this article.

Underutilization of hospice

As a result of these stigmas, there is a very strong underutilization of hospice across the nation, says Russell. “The median hospice length of stay in the United States is 18 days, which means half of our patients are with us for less than three weeks. Even the hospice average length of stay nationwide is in the 70s.”

However, the Medicare hospice benefit is designed for terminally ill patients with a life expectancy of up to six months, explains Russell. “Six months is how hospices define the benefit, so it’s a shame that we sometimes can’t get nursing home residents on earlier. We need to make sure that residents and families really understand what the benefit is all about.”

Note: For additional information about the Medicare hospice benefit, including when residents can use skilled nursing facility (SNF) and hospice benefits simultaneously, see chapter 9, “Coverage of Hospice Services Under Hospital Insurance,” of the Medicare Benefit Policy Manual.

Steps that directors of nursing (DNSs) can take to help residents and families change their perspective of hospice sooner rather than later include the following:

Identify strong hospice partners via their education and collaboration

“Ensuring that residents and families are prepared to take advantage of the hospice benefit at the right time hinges on a strong partnership between the nursing home and the hospice provider,” says Russell. “The hospice partner must be willing to come out and provide staff education not only at the beginning of the relationship, but on an ongoing basis. The initial education should provide an overview of hospice, and then the hospice partner should continue building on that to help facility staff understand the hospice’s philosophy of pain management and symptom management.”

This additional education also should dig a little deeper on the types of residents who should be referred to hospice, says Russell. “For example, at my hospice, we provide a lot of education about disease processes such as dementia to nursing home staff. When we finish these teaching moments, there is always an ‘aha’ moment where staff start to realize which residents may meet the criteria for the hospice benefit.”

Another good indicator of a strong hospice partner is the level of collaboration that they provide on the plan of care, says Russell. “Federal regulations require that nursing homes and hospice providers collaborate on a coordinated plan of care because the hospice provider oversees the provision of hospice care and services (e.g., the medical direction and management of the resident, counseling, social work, etc.), while the nursing home retains primary responsibility for non-hospice services (e.g., personal care, medication administration, support for activities of daily living, etc.) But beyond the regulatory requirements, good collaboration on the care plan also strengthens the approach to symptom management, improves outcomes, and makes residents more comfortable, with a higher overall quality of life and higher levels of resident and family satisfaction.”

Note: For additional information on the requirements for a coordinated plan of care, see F-tag 684 (Quality of Care) Appendix PP, “Guidance to Surveyors for Long-Term Care Facilities,” of the State Operations Manual.

Have a goals-focused conversation with residents and families

While the physician and the hospice provider both play a role in helping residents and families understand how hospice can help, nursing home staff who are comfortable having that conversation should help get the process moving, suggests Russell. “Facility staff have the trusting relationship with residents and families, so it’s critical for them to have an exploratory conversation to ease the transition instead of just saying, ‘We are going to have hospice come in and talk to you because you don’t have much time left.’ That’s when the wall goes up.”

One positive way to start the conversation is to say, “Tell me what you want to do when your condition worsens—what you want your care to look like,” advises Russell. “When you ask residents and families who are facing a serious illness that is limiting the resident’s life to define what they want for their journey, most of the time they will define hospice care before you mention the subject.”

That approach opens the door for nursing home staff to introduce hospice without doom and gloom, says Russell. “For example, you might say, ‘We have a partner in the community, Hospice of Northwest Ohio, that provides the services that you just described to me, and we would love to have them come talk to you.’ That will provide a more seamless transition that takes away some of the negative connotations.”

Understand that the hospice conversation is not a one-and-done event

F684 in Appendix PP of the State Operations Manual offers the following guidance about the timing of hospice conversations:

There is no requirement that a nursing home offer hospice services. Although a resident may meet the eligibility requirements and may choose to elect the hospice benefit, the nursing home may or may not have an arrangement with a hospice to provide hospice care and services. If the nursing home has an agreement with a hospice, it must, consistent with F552, inform each resident before or at the time of admission, and periodically during the resident’s stay, of hospice services available in the nursing home.

“The timing of those periodic conversations is really important,” says Russell. “There is always a trigger, but it can be difficult to understand and find that decline when you are with a resident every single day.”

The more obvious times to discuss hospice are when residents and families ask about advance directives, when they have been given information about a new diagnosis that is most likely terminal, and when the family is making a tough decision about whether to send the resident to the hospital or pursue a more gentle approach that improves quality of life, says Russell.

Other indicators that a conversation about hospice may be warranted include the following, according to Russell:

  • A significant increase in the resident’s frailty score;
  • Trips to the hospital or multiple trips to the physician for a condition;
  • A significant change in functional status;
  • An increase in falls;
  • Frequent infections; and
  • Significant weight loss of 5 percent in 30 days or 10 percent in 180 days (as captured in MDS item K0300).

“There is a long list of potential reasons to initiate a conversation about hospice, but what it comes down to is: What has occurred that makes you think their condition is declining more rapidly?” says Russell. “Nursing homes that are aware of what hospice is looking for and have a strong process for identifying changes of condition are more likely to have a higher hospice census because they bring in hospice earlier to meet the resident’s needs.”

Don’t assume physicians know how to discuss a resident’s prognosis

Physicians have a critical role in ensuring that residents and families understand what the prognosis is, says Russell. “Some physicians are good at having these conversations, and some are not very good at it. You would think that an oncologist, for example, would be very good at it because they deal with life-and-death decisions all the time,” he notes. “However, that is not necessarily true. It really depends on the physician.”

Hospice partners may be able to work with the facility’s medical director to provide education for attending physicians, suggests Russell. “For example, my hospice has developed a special training program for our community physicians to give them some guidance on the best way to approach that conversation from a provider standpoint. Essentially, we lay out a framework for physicians to present information in a way that helps residents and families understand the prognosis and what to expect from their disease going forward.”

What this all boils down to is that the easiest way to overcome reluctance is to sit down and listen to the resident and family, points out Russell. “Once they define for you what their goals are, then you know which path is right for them. If they understand the prognosis but they are still of a mindset where they want to aggressively treat everything, then pushing them down a hospice path is not going to be beneficial for anyone.”

Note: For additional tips on working with hospice, see the April 2022 AAPACN article “Hospice Requirements: Significant Changes and Care Planning,” the February 2022 article “How to Improve the Facility’s Collaboration With Hospice,” and the March 2020 article “Partner Up: Keys to Working With Hospice Providers,” as well as the February 2022 Hospice Collaboration Toolkit.

In the era of publicly reported quality measures (QMs), helping to ensure that residents to enroll in hospice timely is beneficial not just for residents and their families, but for nursing homes as well. Captured either on MDS item O0100K (Hospice Care) or via fee-for-service Medicare hospice claims data, hospice serves as an exclusion or is used in risk adjustment for multiple MDS-based and claims-based QMs in both the Skilled Nursing Facility Quality Reporting Program (SNF QRP) and the Nursing Home Quality Initiative (NHQI), some of which feed into the QM domain in the Five-Star Quality Rating System.

Further, in the Fiscal Year (FY) 2023 Skilled Nursing Facility Prospective Payment System (SNF PPS) proposed rule, the Centers for Medicare & Medicaid Services (CMS) proposes to add one of these claims-based SNF QRP QMs into the Skilled Nursing Facility Value-Based Purchasing Program (SNF VBP) effective with the FY 2027 program year—bringing a measure with a hospice exclusion into this growing pay-for-performance program.

Here’s a glimpse of how hospice impacts QMs:

NHQI QMs  
MDS-based QMs. Hospice is an exclusion for the following:  
– Percent of Short-Stay Residents Who Made Improvements in Function*
– Percent of Long-Stay Residents Whose Need for Help With Activities of Daily Living Has Increased*
– Percent of Long-Stay Residents Who Lose Too Much Weight
– Percent of Long-Stay Residents Whose Ability to Move Independently Worsened*
– Percent of Long-Stay Residents Who Used Antianxiety or Hypnotic Medication  

Claims-based QMs. Hospice is an exclusion for the following:  
– Percentage of Short-Stay Residents Who Were Re-hospitalized After a Nursing Home Admission
– *Number of Hospitalizations per 1,000 Long-Stay Resident Days *, **
– Percentage of Short-Stay Residents Who Have Had an Outpatient Emergency Department Visit*
– Number of Outpatient Emergency Department Visits per 1,000 Long-Stay Resident Days*, **  

* Used in the Five-Star Quality Rating System.
* Also used in the measure’s risk-adjustment model.
SNF QRP  
MDS-based QMs. Hospice is an exclusion for the following SNF functional outcome measures:  
– Discharge Self-Care Score for SNF Residents
– Discharge Mobility Score for SNF Residents
– Change in Self-Care Score for SNF Residents
– Change in Mobility Score for SNF Residents  

Claims-based QMs. Hospice is an exclusion for the following:  
– Discharge to Community—Post-Acute Care (PAC) Measure for SNF QRP*  

Claims-based QMs. Hospice is used in risk adjustment for the following:  
– Medicare Spending Per Beneficiary—Post-Acute Care (MSPB-PAC) SNF Resource Use Measure  

* The FY 2023 SNF PPS proposed rule proposes the inclusion of this measure in the SNF VBP effective with the FY 2027 program year. This would have a proposed performance period of Oct. 1, 2023 – Sept. 30, 2025 and a proposed baseline period of Oct. 1, 2020 – Sept. 30, 2022.  

Sources: NHQI and SNF QRP measure technical specifications.

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