My father died a little over a year ago. While I usually derive tremendous comfort and support by sharing both happy and sad milestones with friends, family, and colleagues, in this instance, sharing the news earlier would have just been too hard. His death was about one year after receiving a diagnosis of inoperable pancreatic cancer, just one year after he sent me a video of his jaundiced body asking me what he should do.
Close to the end of his beautiful life, it became clear that we needed more support to manage the pain and other symptoms associated with this horrible cancer. Despite my sister and I both being nurses, my Dad concluded that his needs exceeded our desire to care for him at home, and he was right. He chose hospice care in an inpatient setting; it was a difficult decision, but the best one.
Caring for Dad meant getting up close and personal with the U.S. healthcare system. While the journey was peppered with moments of inelegant bureaucracy, there were moments of grace as well. And overall, Dad’s care at the end of his life was dignified, skillful and merciful. Hospice allowed me to be a son and not a nurse. The family was able to tell stories, share music and memories, and ultimately say goodbye. No regrets.
In 2020 1.72 million Medicare beneficiaries were enrolled in hospice care, which represents a 6.8% increase from the prior year. Yet the hospice benefit is seldom elected in the nursing home. An earlier publication on hospice utilization in nursing homes identified that only a small fraction of those who qualified for the hospice benefit accessed it.
That said, hospice utilization has increased since the initial introduction of the benefit, likely due to societal acceptance and broadening of what is considered a terminal diagnosis, such as Alzheimer’s disease. Research has repeatedly supported the management of a nursing home resident’s pain and other common symptoms significantly improves when receiving hospice services, as does family satisfaction. The evidence is clear: Hospice is most often the right choice.
Providing less than excellent care at end of life isn’t the intention of caregivers in nursing homes — in fact, many facilities have extraordinary palliative care programs in place. However, how effective can these programs be when so many facilities are treading water just to get through the day? Can we truly believe that we are doing the best job for our dying residents while we are challenged with filling shifts and addressing high turnover rates? Wouldn’t some extra sets of hands benefit not only residents and families, but also staff?
I’d like to make another point, though. A person who has hospice indicated on their Minimum Data Set (MDS O0100K2) will be excluded from multiple CMS Quality Measures (QMs). For example, if hospice is coded on the MDS, the resident’s decline in ADLs or lack of improvement in function will not be counted against the facility — as, of course, they shouldn’t be. That is because the indication of hospice on the MDS is one of the exclusions for these measures. Look at the list of measures below. All will exclude hospice residents from their calculations. Some of these measures are part of CMS’s SNF and some states’ VBP program, the QRP program, Five-Star, and the survey process measures.
Residents actively dying and not on hospice will still be counted in these measures, negatively impacting your quality metrics.
Hospice (O0100K2), as indicated on the MDS, will exclude you from the following CMS quality measures:
- ADL Decline Percent of Residents Whose Need for Help with Activities of Daily Living Has Increased (LS)
- Percent Of Residents Who Used Antianxiety or Hypnotic Medication (LS)
- Worsening In Independent Movement Percent of Residents Whose Ability to Move Independently Worsened (LS)
- Improvement In Function Percent of Residents Who Made Improvements in Function (SS)
- Number Of Hospitalizations Per 1,000 Long-Stay Resident Days
- Percentage Of Short-Stay Residents Who Were Re-Hospitalized After a Nursing Home Admission
- Rate of Successful Return to Home and Community From a SNF
- 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
- Percent Of Residents Who Lose Too Much Weight (LS)
- SNF Functional Outcome Measure: Discharge Self-Care Score for Skilled Nursing Facility Residents
- SNF Functional Outcome Measure: Discharge Mobility Score for Skilled Nursing Facility Residents
- SNF Functional Outcome Measure: Change in Self-Care Score for Skilled Nursing Facility Residents
- SNF Functional Outcome Measure: Change in Mobility Score for Skilled Nursing Facility Residents
Hospice for my Dad was the right thing. It wasn’t perfect, nor were prior hospice experiences with other family members. But it was as close to perfect as death can be. His care was imbued with competent and compassionate symptom management — and, most importantly, with dignity and respect.
Steven Littlehale is a gerontological clinical nurse specialist and chief innovation officer at Zimmet Healthcare Services Group.
The opinions expressed in McKnight’s Long-Term Care News guest submissions are the author’s and are not necessarily those of McKnight’s Long-Term Care News or its editors.
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