Over the past few months, our home care situation has shifted. My mother is now very frail. Lifting her with two people is difficult. I could not have survived autumn without the help of our home #hospice aides from Compassionate Care. But what happens when families are supposed to receive hospice services that don’t materialize? When hospice hurts, we need to take action.
When Hospice Hurts
If you’ve reached the point where hospice services are appropriate for your loved one do some research on providers first. Look for evidence of client satisfaction before you sign anything. First, try a quick Internet search. Modern consumers rate everything from refrigerators to paint. You should be able to find provider rankings online. Ask potential providers if they employ many aides near your home who’ll be available to provide you with adequate support. Request references from families who’ve received their services. If they offer nothing, maybe they have nothing to offer.
A recent article by JoNel Aleccia and Melissa Bailey in the Huffington Post describes devastating situations when hospices hurt families. Patricia Martin, for example, lived in an Alaskan village and desperately needed help. She repeatedly called her hospice provider seeking drugs to ease her husband’s accelerating pain. Mat-Su Regional Home Health & Hospice had promised 24 hour crisis care. But the hospice doctor and nurse both failed to show up for six days, leaving Ms. Martin on her own. Her husband died shortly afterward.
What if Hospice Fails you?
Ms. Martin’s story is just one of many such tragedies occurring in the wake of tremendous growth in the hospice industry. The same #HuffPost article states that hospice is a “booming industry that served about 1.4 million Medicare patients in the U.S. in 2015.” That number includes a third of Americans who died that year. Hospice providers are both “licensed by state health agencies and subject to oversight by federal Medicare officials.” Any service regulated by these entities can also be reported for failure to respond or other forms of negligence. Step one is to call your state’s office for Adult Protective Services. You can also contact the State Medicaid Fraud Control unit and file a complaint.
Research suggests that there are many instances when families are deprived of required #hospice services. According to law, hospice providers must deliver routine care and respite care (to give family caregivers a break). In addition, they must provide two levels of crisis care for patients with acute suffering. Yet the HuffPost article states that according to the Centers For Medicaid and Medicare Services (CMS), “21 percent of hospices … failed to provide either form of crisis care in 2015.”
If you are considering the use of #hospice services, you can learn much more about the industry online. You will find studies and consumer facts on the website for Kaiser Health News. This news site is a publication of Kaiser Health Foundation, a non-profit organization focusing on national health issues. More information can help you make better choices about how to help your loved one and meet your own needs as a #caregiver.