Q. My mother, Claire, has Parkinson’s and she’s at the point where she can no longer swallow and will need a feeding tube. She still lives at home with my father, who is having a hard time taking care of her. She has been hospitalized several times in the past few months for falls. Last time we were at the hospital to visit, the head nurse said we should consider hospice for her.
I’ve heard mixed things about hospice and when the family addressed the subject, we weren’t quite sure if it was the right thing to do, although she is in the advanced stages of her disease. Honestly, we were leaning more toward nursing home care but saw how expensive it is and how hospice is covered by Medicare, and this has helped make our decision.
The problem is, we can’t find a hospice provider that is able to take care of her. The hospice providers we contacted are all turning patients away and putting people similar to my mother on waiting lists. Please enlighten me on how this could be happening when people like my mother really need the comfort that hospice can provide at the end of life. We’re thinking that this is a sign that we should probably revisit the original plan of nursing home care. But it’s so unaffordable. She’d be broke in about a year if we paid for a nursing home care out of pocket in Northern Virginia. Do you have any suggestions for people in our situation? Thanks for your help!
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A. In a recent New York Times article, writer Paula Span describes how hospice companies are grappling with pandemic-fueled staff shortages, which have forced them at times to turn away new patients or delay their enrollment. This is devastating for seniors and their families who need the services that these hospices provide.
The coronavirus pandemic has taken a heavy toll on hospices since its onset. This is a major problem, since the home health care industry and hospice care have both already been facing workforce shortages for years. According to a recent article from Hospice News, rising turnover stemming from the COVID-19 pandemic has worsened the industry’s staffing shortages, and some hospice providers are starting to shut down their programs or sell off their operations because they cannot recruit or retain a sufficient number of employees.
Hospice Staff Shortages Are Occurring Across the Country
Hospice staff shortages have developed across the country, and while closing to new patients is not a common response, “it’s getting worse,” said Edo Banach, president and CEO of the National Hospice and Palliative Care Organization.
In the current health care system where understaffing is common, some routine procedures or elective surgeries can be deferred without much harm. Unfortunately, more than half of the 2.3 million Medicare beneficiaries who die annually rely on hospice care, Medicare reported. “It causes huge distress to tell a family, ‘We can’t serve you,’ ” said Barbara Hansen, who directs Oregon’s and Washington’s state hospice and palliative care organizations.
These are some other facts about hospice in the United States:
- Families of dying loved ones turn to hospice care services when a diagnosis is terminal and pain-free comfort is the first priority.
- Hospice is available through Medicare to critically ill patients who are expected to die within six months and agree to forego curative treatment.
- Because many put off enrolling — U.S. patients spend a median of 18 days in hospice — even short waits can mean the loss of valuable care, from pain relief to help with household tasks.
- More than 35 percent of hospice leaders surveyed by Hospice News and Homecare Homebase earlier this year cited staffing shortages as a top concern for their organizations, along with regaining access to patients in facilities.
- The United States currently has only about 13 hospice and palliative care specialists for every 100,000 adults 65 and older, according to an April 2018 study.
- By 2040, the patient population will need 10,640 to 24,000 specialists; supply is expected to range between 8,100 and 19,000.
- Providers face unique challenges when it comes to recruiting medical, social work, and nursing students, mostly due to limited exposure to hospice and palliative care during training. Most students in clinical disciplines do not feel prepared to provide end-of-life care, according to a 2018 study.
Hospice Isn’t Always the Right Answer for a Loved One
Hospice can be beneficial in some situations but isn’t always the best situation for a loved one with a terminal illness. In fact, in an investigation of 20,000 government inspection records, Time magazine, in collaboration with Kaiser Health News, revealed stories of families around the country who received poor treatment and neglect from hospice agencies.
Some examples include no data on quality of hospices, safety concerns due to infrequency of inspections, and rising discharge rates, as described in my newsletter article on the subject, titled “The Ugly Side of Hospice Care.”
Nursing Home Hospice Care May Be a Better Option than Home Hospice Care
Unlike hospices, nursing home are staffed with nurses and doctors 24/7, making them (in many cases) a better choice for a loved one’s long-term care needs and end-of-life needs. Many nursing homes have a contract with one specific hospice provider, so if you have a loved one in a nursing home, you might not have a choice in picking a hospice provider. However, you know that if you’re in a nursing home, you’re not going to be left without care at the end of life even if the hospice provider fails to show up. Of course, like the entire health care industry, nursing homes are experiencing staffing shortages of their own.
Nursing Homes in the DC Metro Area Cost $10,000-14,000 a Month
To protect your family’s hard-earned money and assets from the catastrophic costs of nursing home care, the best time to create your long-term care strategy is before you actually need long-term care. If you or a loved one is over 65, we recommend that you begin your asset protection planning now. Even if you are currently receiving long-term care services for yourself or a loved one, it’s still not too late to plan and protect your assets. Please call us when you’re ready to make your appointment for an initial consultation:
Fairfax Elder Law Attorney: 703-691-1888
Fredericksburg Elder Law Attorney: 540-479-1435
Rockville Elder Law Attorney: 301-519-8041
DC Elder Law Attorney: 202-587-2797
About Evan H Farr, CELA, CAP
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