The Truth About Hospice

Hospice is widely touted as the best form of care near the end of life. As a result, the proportion of people who are enrolled in hospice at the time of death has been steadily increasing. Nearly half of all Medicare patients are receiving hospice care at the time of death. But a new report suggests that the quality of care they receive may not be what it should be. Moreover, a chunk of the $16.7 billion that Medicare spends on hospice (that was in 2016; it's more today) goes towards care that is unnecessary or not provided at all. What exactly is the problem? How widespread is it and how can patients and families identify hospices that provide high quality care?

While substandard care and fraudulent billing are distributed throughout the country, these practices occur disproportionately in the 64 percent of hospices that are for-profit. The bad behavior predominantly involves two specific variants of hospice care: general inpatient hospice care and hospice services that are provided within institutions, whether skilled nursing facilities or assisted living facilities. General inpatient care is an intensive form of care offered when symptom control cannot be achieved elsewhere (ie at home], so the patient is transferred to a hospital or skilled nursing facility. For this type of care, Medicare pays a per diem rate of $720, compared to $187 for home hospice (actually this is the rate for days 1-60, after that, the rate drops to $147 per day). The kinds of abuses that have been reported are indeed disturbing: the report gives several examples.

However,  General Inpatient Care accounts for only 1.5 percent of all the days that patients were enrolled in hospice. 

Other cases of allegedly inappropriate billing take place in Skilled Nursing Facilities (SNF) or in Assisted Living Facilities (ALF). Some instances were unequivocally fraudulent, as when hospices paid facilities to enroll patients in hospice, sometimes without the knowledge of patients or their families.  But again, it’s important to keep this in perspective.  A minority of hospice patients are cared for in these environments: 25 percent of hospice beneficiaries during the period the study examined (2006-2016) lived in a SNF and only 13 percent in an ALF.

Several of the criticisms leveled by the report are of questionable significance. The study says that many hospices fail to develop the mandatory “comprehensive care plan,” a document that spells out what services the patient needs and how they will be provided. This failing was especially egregious in the inpatient setting, where in 85 percent of cases, no such plan was documented. But the absence of a written plan doesn’t mean there was no plan or that inadequate care was provided. It means just what it says—the hospice did not create the requisite piece of paper. Maybe, just maybe, they thought it was a waste of time, a meaningless bureaucratic requirement.

Hospice care is also criticized for failing to provide physician visits. Actually, hospice does provide one physician visit. A face to face visit with a physician at the time of admission to hospice has been mandatory since 2011, so hospice patients do see a physician at least once during their hospice stay, which in many cases is short: over half of all hospice patients are enrolled for less than 30 days, and over one-fourth are enrolled for a week or less. Many hospice patients and their families would like more involvement of the medical profession, particularly their primary care physician or the relevant specialist, but that’s different from suggesting that the quality of care was poor because there were no medical visits at all.

Skilled nursing facilities are accused of double dipping, of billing Medicare for services that they already routinely provide as part of their usual care. This has been a worry since Medicare agreed to cover hospice care in a SNF. Care by nurses and nurses’ aides are a normal component of nursing home care. But that doesn’t mean that the services offered by hospice are redundant; on the contrary, the reason that hospice can be beneficial in the SNF environment is precisely because the usual nurses may not be skilled in pain management and the amount of aide time may be totally inadequate for a dying patient.

Lastly, the report argues that the payment system incentivizes hospices to minimize services and to cherry pick patients, selecting low-need, long-stay patients, such as those with advanced dementia, rather than high-need, short-stay patients, such as those imminently dying of cancer. We’ve known about this phenomenon for some time. In fact, CMS responded by modifying its payment system to pay more for the first few days of care and for the last few days of care and less for the in-between days. The practice of complementing high-cost patients with low-cost patients is only a problem if the low-cost patients don’t deserve to be enrolled in hospice at all. If they do, and there’s every reason to think they do, then it’s simply a good business strategy. Hospitals do the same thing when they add services for which they are generally reimbursed well to compensate for the services for which they are poorly reimbursed. The alternative would be to abandon the per diem payment system and go to fee-for-service. But that’s the model that is gradually fading away from the rest of the medical system because it promotes the use of volume rather than quality.

What should we conclude about hospice care in America? How should prospective patients respond to this report and how should Medicare respond? 

Patients and their families would do well to consult Hospice Compare, the CMS website, for basic information about quality. This tool relies principally on patient and family satisfaction surveys rather than objective measures, but it’s very revealing. Rather than add more measures, which is what the authors of the report propose,  I think the tool should be publicized: I was familiar with Hospital Compare and Nursing Home Compare, but I confess I did not know about Hospice Compare until recently--and the site was launched in August, 2017. 

If families have a choice between a not-for-profit hospice and a for-profit hospice, they may find it prudent to select the not-for-profit option.  On average, not-for-profit facilities are associated with higher quality care. 

As to steps that Medicare should take, increased across the board regulation, which is what the report advocates, seems unduly burdensome. Far wiser would be to target enhanced supervision and regulation to those areas that need it most, namely skilled nursing facilities and assisted living facilities. Stiffer penalties for malfeasance would also be wise. As with banking fraud, it’s not enough to slap the owner or executive director on the wrist. Jail time is a much more powerful disincentive to bad behavior. And the bad behavior we’re talking about here is neglecting people who are dying and in pain.

Medical Care: Fast and Slow

Victoria Sweet is the kind of doctor I wish my mother had. For that matter, she’s the sort of doctor I’d want for myself or my husband: she’s knowledgeable, she’s compassionate, she’s thoughtful, and she’s thorough. Her new book about her evolution as a physician, Slow Medicine: the Way to Healing, is a kind of prequel to her earlier, highly successful book, God’s Hotel: A Doctor, a Hospital, and a Pilgrimage to the Heart of Medicine, which tells of a remarkable, if a bit anachronistic institution, the Laguna Honda Hospital, where she worked for twenty years. Laguna Honda is a chronic disease hospital, a place where people who are too sick for a nursing home but not sick enough for an acute care hospital spend their days. But, in Dr. Sweet’s telling, it is also a place where physicians can practice medicine in a way that is seldom possible elsewhere, with the result that many patients stay at Laguna Honda even when they do become acutely ill, and some can be discharged to the community. God’s Hotel is a paean to “slow medicine,” the movement, like “slow food,” that challenges the contemporary tendency to focus on efficiency, technology, and science rather than deliberation, reflection, and art.

The new book, Slow Medicine, describes Dr. Sweet’s journey from psychology graduate student to staff physician at Laguna Honda. She explains, using many delightful case examples, how she came to understand what slow medicine is and what it has to offer. Her account serves to highlight the differences between slow and fast medicine in actual practice. While Dr. Sweet is at great pains to emphasize the importance of both fast and slow medicine, and in fact is herself able to move effortlessly from one to the other—to “think out of the box” by administering a surprising medication, the opioid-antagonist Naloxone, as part of an otherwise fast-paced resuscitative effort—the point of the book, as with its predecessor, is to glorify slow medicine. Without the deliberative, questioning, comprehensive approach to patients at which she excels, Dr. Sweet assures us, our highly regulated, protocol-driven technological medicine will disappoint.

But there is a problem with this view. It assumes that the reason so much of medicine has become fast medicine is that it has been commodified—“healthcare”  has replaced medical care and “providers” have replaced physicians. Dr. Sweet is partly right: device manufacturers and drug companies are in fact concerned with selling their wares, and economists do promote the reimbursement system for physicians and hospitals as the key to improving health outcomes. They view the interaction between a physician and a patient as a transaction rather than a relationship. But the regulations and the forms, the oversight and the accountability that she so maligns are a response to a reality that she glosses over: in times past, before medicine became so fast, quality was mediocre. It’s simply not true that in the good old days, physicians were healers and now they are technicians. In the bad old days, many physicians used remedies that didn’t work, even though scientific studies had shown they didn’t work, and failed to use treatments that did, even when there was ample evidence for the newer approaches.

What Dr. Sweet neglects to mention in the “slow medicine manifesto,” with which she concludes her engaging and provocative book, is that she can be a superb physician without the rules and the bureaucracy because she is very, very smart, and endowed with an outsize measure of both perspicacity and empathy. Victoria Sweet, as she reveals in her bio but not in the book, majored in mathematics at Stanford University (not an easy thing to do) while minoring in classics (quite likely an unprecedented combination). Then she was accepted into a PhD program in psychology at Harvard, but decided to go to medical school instead. When she became intrigued by Hildegard of Bingen, a nun in the Middle Ages who practiced a kind of holistic, herbal-remedy-based medicine, she didn’t just read what she could about Hildegard, she decided to pursue a PhD in the history of medicine (while continuing to work as a physician). 

Victoria Sweet has much to contribute to the world, and her description of her patients—how she examines them “from stem to stern” and, when she is puzzled by what she finds, spends hours in the library trying to figure out what ails them—is inspiring. But there’s a reason we have rules and regulations, and it has as much to do with the reality that most physicians aren’t like Dr. Sweet as it does with the commodification of medicine.

A Cautionary Tale

Social Security and Medicare, along with other government agencies, understandably worry about fraud. But sometimes this worry gets out of hand. I report here on what my 90-year-old mother has had to go through to get her social security benefits. It’s a cautionary tale for all of us.

Last May, my father died. My parents had been married for 67 years. Losing her spouse was traumatic for my mother even though she was as prepared as anyone can be for his death. But my mother pulled herself together and almost immediately began notifying all the relevant authorities of her husband’s death. The funeral home notified the Social Security administration. My mother was informed that she would get a phone call from Social Security on July 13, notifying her of the next steps she would need to take. In particular, she would learn how to get my father’s social security benefits in place of her own in accordance with the law.

A representative from Social Security did indeed telephone on July 13 and my mother was indeed expecting her call. The rep explained that to receive survivor’s benefits, Social Security needed to see original documents (or copies certified by the relevant authority) to prove her citizenship and her marriage.

My mother was told that her expired passport would not qualify to prove her citizenship as it was issued before September 11, 2001. She would have to obtain a new passport (though presumably the expired passport would qualify her to obtain a new passport) to demonstrate she is an American citizen.

My mother has been an American citizen since she was naturalized in 1953. She has no intention of traveling outside the country in the foreseeable future and therefore has no other need for a valid passport.

My mother was also told that she needed to obtain an “official” copy of her marriage license from the City Clerk’s Office of New York. The only document she had, a photocopy of a certificate given to the young couple by the officiant at the wedding, was worthless. I immediately went on line and discovered that marriage records that are over 50 years old, as my parents’ is, are considered a “historic record” and are available to anyone. We paid the requisite $15 fee and submitted a request for an official copy.

We waited. And waited. My mother contacted the City Clerk’s Office and was able to verify they had received the request and the postal money order for $15. The office explained that it would be 8-10 weeks before the request would be processed.

Meanwhile, the Social Security office explained that my mother’s application to receive her husband’s social security benefits would be “terminated” because she had not supplied the necessary documentation. This despite the fact that she only learned she needed an “original” marriage certificate on July 13, that she had submitted a request for that certificate the very same day, and that the City Clerk of NY said it took up to 10 weeks to provide the requisite piece of paper. Fortunately, the application could be re-opened, provided she supplied the materials required within 6 months of my father’s death.

Ten weeks passed. No certificate. My mother again contacted the City Clerk of NY and learned the certificate would be mailed in a week. A week passed. Then two. No certificate. The clock was ticking. It was now 4 months since my father’s death. My mother attempted to telephone the City Clerk of NY and was put on indefinite hold. She sent the Clerk a letter pleading her case.

Remarkably, someone from the City Clerk’s office telephoned. He indicated the certificate had been sent. It was never received. He then said she would have to request another one. But if my mother had to wait another 10 weeks (or longer), the deadline would have passed. He told her that if she mailed a second money order to his attention, he would personally arrange to send the certificate.

Today, the much anticipated certificate arrived, confirming that my parents were indeed married on September 18, 1948.

The social security office has since informed my mother that her expired passport is adequate proof of citizenship and that when we present the official copy of her marriage certificate later this week, she will receive her husband’s social security benefits—retroactive to the date of his death.

Wish us luck. And to all of you out there who do not have original birth certificates or valid US passports or certified marriage certificates—get your documents in order now, just in case.