2026年8月13日 美国东部时间早上5:00 / KFF健康新闻
“不要再做手术了。”他说。
那是2026年1月中旬，当时73岁的丈夫迈克·萨尔蒙刚从一场长达三个月的磨难中慢慢恢复过来——此前他先后接受了三次与主动脉瘤、败血症相关的手术，还因入住重症监护室陷入了令人恐惧的谵妄状态。然而，又一次致命主动脉瘤发作后，他被救护车送往医院，医生围在病床边说，想要解决问题还需要再做两次大型高风险手术。
医生们预测，如果迈克什么都不做，动脉瘤或败血症很可能会夺走他的生命。那会是多久？“几周，”一位医生说。“我很惊讶自己撑到了现在，”迈克说道。就这样，我们猝不及防地被转入临终关怀护理——美国医疗体系中这条看似走不通的死路。
迈克·萨尔蒙在临终关怀护理期间健康状况大幅改善，因此被开除。金·克拉克 为KFF健康新闻拍摄
临终关怀机构为预计寿命不足六个月的患者提供护理服务，不提供治愈性手术或药物，而是旨在帮助家属让绝症患者在疾病走向不可避免的终点时保持舒适，通常是在家中。日常护理大多由家属承担，85%的家属表示对临终关怀机构的服务非常满意，这些服务包括药物和医疗设备供应，以及护士、治疗师和护工的上门探访。
上一财年，超过190万美国人入住临终关怀机构。其中超过80%的患者会一直留在机构内直至去世，平均时长不到四周。但每年约有6%的患者被开除，原因是临终关怀医生认为患者的病情已经稳定或好转，不再可能在接下来六个月内死亡。
今年5月，迈克加入了这个特殊群体。他进出临终关怀系统的经历，揭示了一些关于家庭如何管理护理的出人意料的经验教训。而被移除临终关怀名单这一过程，也暴露了一个鲜为人知的现实：对于我们这样的家庭来说，这可能是值得欢迎的喘息之机，但对于患有严重慢性病的患者来说，却可能是毁灭性的打击。
以下是我们在入住和离开临终关怀的四个月里学到的东西。
选择前务必核查
“选一家吧。”医院的护士递给我一张当地临终关怀机构的名单。我们越早签字，迈克就能越早回家。突如其来的健康危机让我不知所措，我只是随便指了按字母顺序排在最前面的那家机构，以为它们之间都差不多。
大错特错。医疗保险为其报销的临终关怀机构设定了基本标准，但有些机构人手不足或管理不善。美国临终关怀基金会主席艾米·图奇指出，有些机构会提供额外的治疗、护工支持和其他服务。
我选择的那家机构的问题从一开始就显现了出来：工作人员经常迟到，在迈克的病历上录入不准确的医疗信息，在我们提醒后也不予更正。医疗保险允许患者退出或更换机构，于是我向邻居征求推荐。这是个好开端，但美国临终关怀与姑息医学学会的首席医疗官克里斯蒂娜·纽波特表示，我本还应该在医疗保险的“护理对比”网站和全国临终关怀机构查询网站上核查质量评级。这些网站本可以提醒我注意第一家机构的低评分。纽波特说，理想情况下，患者或护理人员应该致电当地评分最高的机构，了解他们能否提供所需服务，比如能说患者母语的工作人员、符合患者信仰的精神关怀服务，或是距离较近、能在紧急情况下快速赶到的团队。
邻居们推荐的当地老牌非营利机构无缝完成了转接。他们的工作人员守时、办事准确且态度友善。更换机构后最让人满意的是：之前那家机构的一名护士打来电话，说她希望我不是因为“对我们照顾你母亲的担忧”而提出更换。
有些人在临终关怀期间病情会好转
目前相关研究尚未完全探明原因，但确实有一些患者在临终关怀期间健康状况得到改善。例如，研究发现，与接受标准医疗护理的同类患者相比，患有充血性心力衰竭或肺癌的临终关怀患者平均寿命能延长约一个月。
康涅狄格大学开设老年法和临终关怀课程的特里·伯瑟尔表示，许多患者得益于临终关怀机构精心的疼痛管理，以及脱离医院环境——在医院里他们面临感染和过度治疗的风险。回到家后，迈克不用再等劳累不堪的护士花数小时拔掉一堆监护仪就能起身走路，还能吃上真正的家常饭菜。此外，临终关怀护士还给了他帮助整晚安睡的药物。很快，他的体重和体力就开始恢复。
你可能会因为“死得不够快”而被临终关怀机构开除
医疗保险和许多其他保险公司仅为经医生证明在最近一次评估（而非入住日期）后六个月内可能死亡的患者支付临终关怀服务费用，因此临终关怀工作人员会定期对患者进行重新评估。医疗保险会对机构进行审计以防范欺诈，并要求为那些审计人员认为并非绝症患者的护理费用退款。无论机构好坏，都会担心自身的财务状况和医疗保险的欺诈审计。它们可能会迫于压力开除那些可能影响机构财务的患者，尽管这种开除会剥夺患者重要的护理服务。“医疗保险担心的是欺诈和滥用，而不是人们得不到足够的护理，”伯瑟尔说道。
特别是对于预后不确定的病症——比如痴呆症——如果患者病情改善甚至稳定下来，临终关怀医生可能会开除患者，因为他们无法再证明患者在六个月内有死亡风险。
出于某种幸运的原因，迈克的动脉瘤和败血症得到了控制。到5月初，他的伤口已经愈合，体力也恢复得足以重新打理花园、打桥牌，还有亲手制作他标志性的酥皮蓝莓肉桂派。虽然我们很感激护士上门护理以及药物和医疗用品配送的便利，但我们也意识到迈克不再需要这类护理了，因此我们同意了机构做出的开除决定。
加州大学旧金山分校的临终关怀研究员克里斯塔·哈里森表示，对于患有更严重衰弱性疾病的患者来说，被开除可能是一场“噩梦”。开除决定往往下达得很突然。医疗保险要求至少提前两天通知患者。
哈里森的岳父患有类似帕金森症的神经退行性疾病，因病情看似趋于平稳而被开除后，全家不得不匆忙更换并自费支付原本由临终关怀机构提供的设备，比如医院病床和供氧设备，还得迅速找到并雇佣护工来取代临终关怀的护工。“光是重新开具并拿到他的处方就费了很大劲，”她说。她的岳父在被开除六周后去世了。
做好功课以确保获得恰当的护理
了解自己面临的风险和享有的权利，能帮助你在需要的时候获得所需的临终关怀服务。
- 了解你的诊断结果。 哈里森表示，大多数癌症患者不太可能被开除。但痴呆症、心脏病和帕金森症患者往往会出现病情平稳的情况，因此他们被开除的比例高得不成比例。
- 选择评分高的临终关怀机构。 研究表明，营利性临终关怀机构比非营利机构更有可能开除患者。医疗保险的“护理对比”网站会告诉你哪些是营利性机构。
- 保留自己的记录。 哈里森说，护理人员如果能记录下患者对进食协助的需求日益增加，就能帮助临终关怀工作人员批准继续提供护理，或是在提出上诉时更有说服力。
- 让你的家庭医生更多地了解情况。 伯瑟尔建议，家庭医生“没有临终关怀机构面临的财务利益冲突”，可以帮助你对开除决定提出异议。
- 快速提出上诉。 临终关怀机构必须提供关于上诉开除决定的信息。但医疗保险倡导中心的高级律师韦伊-韦伊·郭表示，你必须在终止护理前一天的中午之前提交上诉（在线或电话提交），如果机构只给了你最少的两天通知时间，这可能意味着你只有几个小时的准备时间。
- 重新申请入住。 患者可以随时尝试重新入住临终关怀机构。另一家机构可能会立即接收你。或者，你可以等到患者健康状况恶化后，再尝试联系原临终关怀机构，美国临终关怀基金会的图奇建议道。
最后这个选择就是我们的计划。目前，迈克和我正享受着这些意想不到的额外时光。但不管命运何时降临，迈克说，他很欣慰知道自己能从临终关怀团队那里得到优质的护理。“他们会努力提升我剩余时光的生活质量，”他说道。
KFF健康新闻是一家全国性新闻编辑部，专注于健康议题的深度报道，也是KFF的核心运营项目之一——KFF是独立的健康政策研究、民意调查和新闻资讯来源。
My husband was kicked out of hospice for dying too slowly. Here’s what I learned about navigating hospice care.
August 13, 2026 5:00 AM EDT / KFF Health News
“No more operations,” 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 ambulance ride, the doctors clustered around his hospital bed said the fix involved two more major, risky operations.
If Mike did nothing, the aneurysm or sepsis would likely kill him, they predicted. How soon? “Weeks,” one doctor said. “I’m astonished I’ve made it this far,” Mike said. So, abruptly, we were shunted onto hospice care — the dead-end spur of the American medical system.
Mike Salmon’s health improved so much under hospice care that he got kicked out. Kim Clark for KFF Health News
Hospice agencies manage care for patients expected to die within six months. They don’t 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 they are very satisfied with their hospice’s services, which include supplies of drugs and medical equipment, and visits from nurses, therapists, and aides.
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 — 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.
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 — but can be devastating for patients with serious chronic illnesses.
Here’s what we learned in our four months on and off hospice.
Check before you choose
“Choose one.” 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’s health emergency, I just pointed to the name at the top of the alphabetical list, assuming they were pretty much the same.
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.
The problems with the organization I had chosen started immediately. Staffers were often late. They entered inaccurate medical information on Mike’s paperwork and didn’t make corrections when alerted. Medicare allows you to quit or change agencies, so I asked neighbors for recommendations. 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’s Care Compare site and the National Hospice Locator. Those sites would have alerted me to our first agency’s low ratings. Ideally, Newport said, patients or caregivers should call their area’s top-rated agencies to find those that provide the services you need, such as staff members who speak the patient’s native language, provide spiritual care that aligns with the patient’s beliefs, or are stationed nearby to arrive quickly in an emergency.
The local, long-established nonprofit that neighbors recommended handled the transfer seamlessly. Its staff was punctual, accurate, and kind. The chef’s kiss after we switched: A nurse from the original company we chose called to say she hoped I hadn’t initiated the change because of “concerns about our care of your mother.”
Some people get better on hospice
Research hasn’t 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, on average, than similar patients in the standard medical system.
Terry Bertholet, who teaches courses on elder law and hospice care at the University of Connecticut, said many patients benefit from hospice’s 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.
You can flunk out of hospice for not dying quickly enough
Medicare and many other insurers pay for hospice services only for patients whom physicians certify are likely to die within six months of the most recent assessment (not the date of enrollment), so hospice staff 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’s fraud audits. They may feel pressure to discharge patients who threaten the organization’s finances, even though such discharges can remove important care. “Medicare is worried about fraud and abuse, not about people not getting enough care,” Bertholet said.
Especially for diagnoses with uncertain prognoses — such as dementia — 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.
For some lucky reason, Mike’s 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’s visits and the drug and medical supply delivery, we realized Mike no longer needed care, so we agreed with our agency’s decision to discharge him.
For patients suffering from more debilitating diseases, discharges can be a “nightmare,” said Krista Harrison, a hospice researcher at the University of California-San Francisco. Discharges often happen quickly. Medicare requires giving patients a minimum of two days’ notice.
When Harrison’s father-in-law, suffering from a neurodegenerative disease similar to Parkinson’s, 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. “Just getting his prescriptions reestablished and filled was a big deal,” she said. Her father-in-law died six weeks after discharge, she said.
Do your homework to ensure appropriate care
Arming yourself with information about your risks and rights can help you get the hospice care you need when you need it.
- Know your diagnosis. Discharges are unlikely for most cancer patients. But patients with dementia, heart disease, and Parkinson’s often plateau. So they are disproportionately likely to be discharged, UCSF’s Harrison said.
- Choose a highly rated hospice. Research shows for-profit hospice agencies are more likely to discharge patients than nonprofits. Medicare’s Care Compare site will alert you to which is which.
- Keep your own records. Caregivers who can document, say, a patient’s growing need for eating assistance can help hospice staff approve continuing care, or build a stronger appeal, UCSF’s Harrison said.
- Keep your family doctor more informed. Doctors “don’t have the financial interest” the hospice faces and could help you dispute a discharge, Bertholet advised.
- Appeal quickly. 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’ve been given the minimum two days’ notice, said Wey-Wey Kwok, a senior attorney for the Center for Medicare Advocacy.
- Reenroll. Patients can try reenrolling in hospice at any time. Another hospice agency may take you immediately. Or you can wait until the patient’s health declines and try reenrolling with your original hospice agency, the Hospice Foundation’s Tucci advised.
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’s comforted to know he’ll get good care from the hospice’s staff. “They’ll try to improve the quality of what time I have left,” he said.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism.