\u201cNo more operations,\u201d he said.<\/p>\n
It was mid-January 2026, and my then-73-year-old husband, Mike Salmon, had just started bouncing back from a three-month ordeal of three operations related to aortic aneurysms, sepsis, and a terrifying descent into delirium tied to a stay in the intensive care unit. Now, after another potentially fatal aortic aneurysm and ambulance ride, the doctors clustered around his hospital bed said the fix involved two more major, risky operations.<\/p>\n
If Mike did nothing, the aneurysm or sepsis would likely kill him, they predicted. How soon? \u201cWeeks,\u201d one doctor said. \u201cI\u2019m astonished I\u2019ve made it this far,\u201d Mike said. So, abruptly, we were shunted onto hospice care \u2014 the dead-end spur of the American medical system.<\/p>\n
Hospice agencies manage care for patients expected to die within six months. They don\u2019t provide curative procedures or drugs. Instead, they aim to help families make terminally ill patients comfortable, typically at home, as an illness reaches its inevitable conclusion. Families provide most of the day-to-day care, and 85% have suggested<\/a> they are very satisfied with their hospice\u2019s services, which include supplies of drugs and medical equipment, and visits from nurses, therapists, and aides.<\/p>\n More than 1.9 million Americans were enrolled in hospice in the last fiscal year. Over 80% of those patients stayed on hospice until they died \u2014 within four weeks, on average. But each year, about 6% of patients are kicked out because a hospice doctor decides they have stabilized or improved enough that they are no longer likely to die in the next six months.<\/p>\n In May, Mike joined that select group. His experience in and out of the hospice system revealed surprising lessons about how families can manage care. And getting removed from hospice revealed a little-known process that can represent a welcome respite for families like ours \u2014 but can be devastating for patients with serious chronic illnesses.<\/p>\n Here\u2019s what we learned in our four months on and off hospice.<\/p>\n Check before you choose.<\/strong><\/p>\n \u201cChoose one.\u201d A hospital nurse handed me a list of local hospice agencies. The sooner we signed up, the sooner Mike could go home. Stunned by the suddenness of Mike\u2019s health emergency, I just pointed to the name at the top of the alphabetical list, assuming they were pretty much the same.<\/p>\n Big mistake. Medicare sets basic standards for the hospice agencies it reimburses, but some agencies are understaffed or poorly run. Amy Tucci, president of the Hospice Foundation of America, noted that some agencies provide extra therapy, aide support, and other services.<\/p>\n The problems with the organization I had chosen started immediately. Staffers were often late. They entered inaccurate medical information on Mike\u2019s paperwork and didn\u2019t make corrections when alerted. Medicare allows you to quit or change agencies, so I asked neighbors for recommendations. <\/p>\n That was a good start, but Kristina Newport, chief medical officer of the American Academy of Hospice and Palliative Medicine, said I should also have checked the quality ratings on Medicare\u2019s Care Compare site<\/a> and the National Hospice Locator<\/a>. Those sites would have alerted me to our first agency\u2019s low ratings. Ideally, Newport said, patients or caregivers should call their area\u2019s top-rated agencies to find those that provide the services you need, such as staff members who speak the patient\u2019s native language, provide spiritual care that aligns with the patient\u2019s beliefs, or are stationed nearby to arrive quickly in an emergency.<\/p>\n The local, long-established nonprofit that neighbors recommended handled the transfer seamlessly. Its staff was punctual, accurate, and kind. The chef\u2019s kiss after we switched: A nurse from the original company we chose called to say she hoped I hadn\u2019t initiated the change because of \u201cconcerns about our care of your mother.\u201d<\/p>\n Some people get better on hospice.<\/strong><\/p>\n Research hasn\u2019t yet fully explored why, but some people actually see their health improve under hospice care. Studies have found, for example, that hospice patients with congestive heart failure or lung cancer live about a month longer<\/a>, on average, than similar patients in the standard medical system.<\/p>\n Terry Bertholet, who teaches courses on elder law and hospice care at the University of Connecticut, said many patients benefit from hospice\u2019s careful pain management and from leaving hospitals, where they risk infection and overtreatment. Returning home allowed Mike to get up and walk without waiting hours for an overworked nurse to unplug a bunch of monitors, and to enjoy real food. Also, the hospice nurse gave him medicine to help him sleep through the night. He soon started regaining weight and strength.<\/p>\n You can flunk out of hospice for not dying quickly enough.<\/strong><\/p>\n Medicare and many other insurers pay for hospice services only for patients whom physicians certify are likely to die within six months<\/a> of the most recent assessment (not the date of enrollment), so hospice staffers regularly reassess patients. Medicare audits agencies to check for fraud and demands repayment of funds provided for care of patients its auditors deem have not proved to be terminal. Hospices, good and bad, worry about their bottom lines and Medicare\u2019s fraud audits. They may feel pressure to discharge patients who threaten the organization\u2019s finances, even though such discharges can remove important care. \u201cMedicare is worried about fraud and abuse, not about people not getting enough care,\u201d Bertholet said.<\/p>\n Especially for diagnoses with uncertain prognoses \u2014 such as dementia \u2014 if a patient improves or even stabilizes, hospice physicians might discharge the patient because they can no longer certify a likelihood of death within six months.<\/p>\n For some lucky reason, Mike\u2019s aneurysm and sepsis held off. By early May, his wounds had healed, and his strength had improved enough that he returned to gardening, playing bridge, and whipping up his signature lattice-topped blueberry-cinnamon pies. While we appreciated the convenience of the nurse\u2019s visits and the drug and medical supply delivery, we realized Mike no longer needed care, so we agreed with our agency\u2019s decision to discharge him.<\/p>\n For patients suffering from more debilitating diseases, discharges can be a \u201cnightmare,\u201d said Krista Harrison, a hospice researcher at the University of California-San Francisco. Discharges often happen quickly. Medicare requires that patients be given a minimum of two days\u2019 notice.<\/p>\n When Harrison\u2019s father-in-law, suffering from a neurodegenerative disease similar to Parkinson\u2019s, was discharged because his health seemed to plateau, the family scrambled to replace and pay for hospice-provided equipment such as a hospital bed and oxygen supply, and they had to quickly find and hire aides to replace the hospice aides. \u201cJust getting his prescriptions reestablished and filled was a big deal,\u201d she said. Her father-in-law died six weeks after discharge, she said.<\/p>\n Do your homework to ensure appropriate care.<\/strong><\/p>\n Arming yourself with information about your risks and rights can help you get the hospice care you need when you need it.<\/p>\n Know your diagnosis.<\/strong> Discharges are unlikely for most cancer patients. But patients with dementia, heart disease, and Parkinson\u2019s often plateau. So they are disproportionately likely to be discharged, UCSF\u2019s Harrison said.<\/p>\n Choose a highly rated hospice.<\/strong> Research shows for-profit hospice agencies are more likely to discharge patients than nonprofits. Medicare\u2019s Care Compare site will alert you to which is which.<\/p>\n Keep your own records.<\/strong> Caregivers who can document, say, a patient\u2019s growing need for eating assistance can help hospice staff approve continuing care, or build a stronger appeal, UCSF\u2019s Harrison said.<\/p>\n Keep your family doctor more informed.<\/strong> Doctors \u201cdon\u2019t have the financial interest\u201d the hospice faces and could help you dispute a discharge, Bertholet advised.<\/p>\n Appeal quickly.<\/strong> Hospice agencies must provide information on appealing a discharge. But you must file the appeal (online or by phone) by noon on the day before the termination date, which may mean you have only a few hours if you\u2019ve been given the minimum two days\u2019 notice, said Wey-Wey Kwok, a senior attorney for the Center for Medicare Advocacy.<\/p>\n Reenroll.<\/strong> Patients can try reenrolling in hospice at any time. Another hospice agency may take you immediately. Or you can wait until the patient\u2019s health declines and try reenrolling with your original hospice agency, the Hospice Foundation\u2019s Tucci advised.<\/p>\n That last option is our plan. For now, Mike and I are enjoying these unexpected bonus days. But whenever fate catches up with him, Mike said, he\u2019s comforted to know he\u2019ll get good care from the hospice\u2019s staff. \u201cThey\u2019ll try to improve the quality of what time I have left,\u201d he said.<\/p>\n KFF Health News<\/a> is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF\u2014an independent source of health policy research, polling, and journalism. Learn more about KFF<\/a>.<\/em><\/p>\n This article<\/a> first appeared on KFF Health News<\/a> and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License<\/a>.<\/p>","protected":false},"excerpt":{"rendered":" \u201cNo more operations,\u201d he said. It was mid-January 2026, and my then-73-year-old husband, Mike Salmon, had just started bouncing back from a three-month ordeal of three operations related to aortic aneurysms, sepsis, and a terrifying descent into delirium tied to a stay in the intensive care unit. Now, after another potentially fatal aortic aneurysm and…<\/p>\n","protected":false},"author":0,"featured_media":15086,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[2],"tags":[],"class_list":["post-15085","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-articles"],"_links":{"self":[{"href":"https:\/\/medical-article.com\/index.php?rest_route=\/wp\/v2\/posts\/15085"}],"collection":[{"href":"https:\/\/medical-article.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/medical-article.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"replies":[{"embeddable":true,"href":"https:\/\/medical-article.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=15085"}],"version-history":[{"count":0,"href":"https:\/\/medical-article.com\/index.php?rest_route=\/wp\/v2\/posts\/15085\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/medical-article.com\/index.php?rest_route=\/wp\/v2\/media\/15086"}],"wp:attachment":[{"href":"https:\/\/medical-article.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=15085"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/medical-article.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=15085"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/medical-article.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=15085"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}