What Does Teaching End of Life Care Look Like?

By Barbara Karnes

“Dying is not a medical event” and “The medical model views death as a failure, something to be fixed, to address” are two quotes you will hear from me repeatedly. The second quote is actually part of the foundation of healthcare so when working with end of life caretakers (nurses, social workers, home health aides, even chaplains) we are pulling from that “job pool.” 

With the staffing shortage affecting all areas of healthcare those of us working in end of life must recognize the ideology regarding end of life most workers have—-to fix it. The teaching is that death is bad. Death is a failure.

Yet, in end of life work the patient’s death is the goal, not to be fought or avoided but to be accepted and supported. The before and after the death is where the education and guidance, the “work,” is done.

When hiring, my first question has always been “What are your thoughts about dying and death? What do you think happens?" The response often tells me if the potential hire is a “good fit” for end of life work. When I say “good fit” I mean not only will they be able to provide direction and guidance for the patient and family but will they be able to internally process and adjust to all of their patients dying?

I’ve always said I can teach anyone how to take care of someone who is dying, the physical, communication, supportive skills. It is the interpersonal, empathy, and heart skills that I can’t teach. They are part of the personality fabric of a person, their core, and that I can’t teach or instill.

Working outside the medical model is challenging. You have to learn an entirely different set of skills. Again, dying is not a medical event. It is a social, communal event so our medical skills have less of a role to play than our personal, interactive, teaching skills.

What does teaching how to take care of someone who is dying look like? 

*First, explore your own personal beliefs and experiences of and with dying and death. We carry our personal experiences that in turn make us who we are and how we react to situations. 

*Start teaching about the physical aspects of dying: The process of dying, the months, weeks, days and hours of how death approaches. What are staff to look for to guide families as to time frames and what are instructions for the family? 

*Teach what to do about what you are seeing, not just the physical but the emotional, mental and even spiritual aspects of end of life care. 

*Communication skills are an internal part of end of life care. How do you support? What do you say? What do you not say?

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The Latest on Monkeypox

By the National Institute for Health Care Management

The World Health Organization declared the monkeypox outbreak a global health emergency as the number of confirmed cases has increased to over 30,000 across 88 countries with more than 8,900 cases in the U.S. (as of August 8th, 2022). On August 4th, President Biden declared monkeypox a national public health emergency. 

• Vaccines: The U.S. Food and Drug Administration announced that nearly 786,000 doses of the monkeypox vaccine will be made available for distribution. The Centers for Disease Control and Prevention (CDC) estimates that nearly 1.5 million people are eligible for the vaccine.
• Not a Sexually Transmitted Infection (STI): While monkeypox cases have predominately been found among men who have sex with men, it is neither an STI nor does it only impact specific communities. Transmission can occur through skin-to-skin contact, touching contaminated objects, respiratory secretions, and during pregnancy. Experts have warned that stigmatizing messaging reinforces stereotypes and can undermine response efforts, as was the case during the HIV/AIDS epidemic. 
• Impact on Health Clinics: Sexual health clinics, which have already been under pressure from years of underfunding and COVID-19, are now on the frontline of the growing monkeypox outbreak. 
• Outlook: Many have compared the response to monkeypox in the U.S. to that of the beginning of the COVID-19 pandemic. Despite recent expansions in testing capacity, areas are still facing shortages, delays in getting results, and a lack of reliable ways to test.

Resources:

• Learn more about monkeypox transmission, signs and symptoms, and how to practice safer sex with these CDC resources. 
• Stay up-to-date on the latest news and resources with the National Coalition of STD Directors’ Monkeypox Command Center.

Q&A on the Overdose Crisis

By the National Institute for Health Care Management

The CDC estimates that more than 107,000 Americans died of drug overdoses last year - a record high. Learn more about the overdose crisis:

Q: How are racial disparities widening in overdose deaths?
A: According to a CDC report, overdose deaths are increasing fast among Black and Indigenous people. Black people ages 15 to 24 had an 86% increase in death rates compared to a 34% increase among White people of the same age group. The disproportionate increase among Black and Indigenous people may be due to health inequities, like unequal access to treatment.

Q: What is the role of fentanyl in the overdose crisis?
A: Deaths involving illicitly manufactured fentanyl are on the rise, which is often mixed with other illicit drugs without the user’s knowledge. Fentanyl-related deaths in the U.S. occur more often than gun and auto-related deaths combined. The Drug Enforcement Agency warns of a nationwide spike in fentanyl-related mass-overdose events. 

Q: How does harm reduction reduce overdose deaths?
A: The Biden administration’s strategy to address the overdose crisis is the first to incorporate harm reduction strategies, which include access to naloxone (the antidote to opioid overdoses), sterile needles, drug test strips, and supervised injection sites. 

Q: Are people with addiction able to receive treatment?
A: A recent study found that 87% of people with opioid use disorder (OUD) do not receive evidence-based treatment. Medications for OUD can reduce opioid overdoses by 50%.

Q: What about people with chronic pain?
A: The 2016 CDC guidelines for prescribing opioids for pain have been credited with leading to harmful consequences for patients with chronic pain. The 2022 proposed guidelines remove the upper limits for prescription opioids, emphasize a patient-centric approach, and expand on alternative treatments.

Resources & Initiatives:

• NIHCM Grantee, STAT, is releasing a series on addiction in 2022.
• Florida Blue Medicare created a pilot program identifying members who have been prescribed opioids and are at risk for addiction. 
• Visualize the impact of the opioid overdose crisis in nine charts created by NIHCM. 
• Blue Cross Blue Shield of Michigan is part of the Michigan Opioid Partnership, which awarded nearly $500,000 in grants to four SUD recovery community organizations.
• The Highmark West Virginia Charitable Fund for Health awarded more than $600,000 in substance use disorder program grants.

SAMHSA’s National Helpline for individuals and families facing mental and/or substance use disorders is 1-800-662-HELP.

CMS Hospice Quality Reporting Programs Updates

From NHPCO

On August 4, 2022 CMS announced the following updates that go into effect with this month’s HQRP data refresh.

• Hospice Visits in the Last Days of Life (HVLDL): On July 26, 2022, the National Quality Forum (NQF) endorsed the claims-based measure, Hospice Visits in the Last Days of Life, or HVLDL as NQF #3645. According to CMS “HVLDL reflects the proportion of hospice patients who received in-person visits from a registered nurse or a medical social worker on at least two of the final three days of life. HVLDL is the re-specified measure replacing the HIS-based Hospice Visits When Death is Imminent (HVWDII).” The August 2022 refresh will be the inaugural month for public reporting for HVLDL, which replaces public reporting of HVWDII. Further information, including a link to the NQF website, can be found on the Hospice Quality Reporting Program (HQRP) Quality Measure Development webpage.
  
  
• Public Display of Hospice Care Index (HCI): Public reporting will also be available for the HCI measure during the August 2022 HQRP data refresh. The HCI is a single Medicare claims-based measure that includes 10 indicators of hospice stay, including indicators like burdensome transition and visits near the end of life. The HCI Technical Report has been made available for download effective July 1, 2022.
  
  
• Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Star Ratings: CMS is targeting the August 2022 refresh for inaugural public reporting of the new Family Caregiver Survey Rating Summary Star Rating for the CAHPS Hospice Survey measure scores. Beginning this month, it will be publicly reported for all hospices with 75 or more completed surveys over the reporting period. Star Ratings will be updated every other quarter (every six months). Prior to public reporting, CAHPS Hospice Survey results are adjusted for effects of mode of survey administration and case mix. Details with overview of the purpose, timeline and methods can be found on the website. The national and state Star Rating distribution reports for the most recent reporting periods are available for download.

Additionally, CMS shared two new videos with helpful explanations on HQRP and HCI:

• HQRP: Hospice Care Index Measure (HCI) Informational Video
  
• HQRP Explanatory Video

For questions, email [email protected].