Susan Wolfson had not had a bath in almost a month. A broken right arm—combined with large tumor masses in her abdomen that were obstructing her intestine, and one in particular that was pressing on the nerves to her right leg, causing her intense pain—meant that a bath was an almost insurmountable task. And for Susan Wolfson, that’s saying something.
Mrs. Wolfson was a lawyer known for getting things done. She began practicing law in 1976, and soon rose through the ranks, becoming President of the New Haven Bar Association, then the Connecticut Bar Association, and finally serving as an officer of the national family law section of the American Bar Association. The New Haven County Bar Association honored her with its lifetime achievement award posthumously in 2005. The award typically goes to someone who has been in practice for forty years, and she had worked for less than thirty.
Mrs. Wolfson was an expert at dispute resolution—if there was anyone who could keep clients filing for divorce out of a long, protracted, and costly court battle, it was she. She even helped found an alternative dispute resolution company, a mediation service called Sta-Fed ADR, Inc.
“A prominent source of referrals for her were spouses who had been on the other side of her cases,” said Steven Wolfson, her husband of forty-five years. The two met at a party their freshman year of college, when Susan was at Barnard and Steven at Columbia, and they’ve been together ever since.
Even after Mrs. Wolfson was diagnosed with ovarian cancer, she continued to work until 2004, when she finally had to retire. And then, after a long, hard battle—she had first been diagnosed six years earlier—Mrs. Wolfson decided that it was time to stop fighting and start living.
By then, she could no longer eat due to the masses that had spread throughout her abdomen. The contents of her stomach had to be continually suctioned out through a special machine. She couldn’t walk. She was in a great deal of pain when she finally suggested a transfer from Yale-New Haven Hospital to Connecticut Hospice, a facility in Branford devoted to end of life and palliative care, a facility to which Dr. Wolfson, a cardiologist, often refers his patients.
There are four levels of hospice care, ranging from the lowest level called routine care, in which a patient receives support services such as visits from a nurse to their own home, to the highest level of care, in which the patient is cared for in an inpatient unit. The Richard L. Rosenthal Hospice Center in Stamford provides inpatient hospice care but is licensed as a skilled nursing facility, while inpatient services at Middlesex Hospice and Palliative Care are provided on the top floor of Middlesex Hospital. Currently, CT Hospice is the only facility in Connecticut licensed specifically as a hospice to provide all four levels of care.
Just days after her arrival there, Mrs. Wolfson finally got what she had spent four weeks of her life longing for: a bath.
It took three nurses’ aides to do it, and a nurse about fifteen feet away if anything should go wrong. Together, the three aides used a hoist to raise Mrs. Wolfson up, and then they slowly lowered her into a giant tub filled with hot water, a tub that looked to Dr. Wolfson rather like a Jacuzzi.
Mrs. Wolfson loved it, and the bath soon became a regular occurrence, with the nurses singing her songs while they bathed her. Their favorite, Dr. Wolfson fondly recalled several years later, was “You Are My Sunshine.”
The melody of the song is simple, and so too is the chorus. First recorded in 1939, it is a song parents still sing to their toddlers as they tuck them in at night. Yet, it seems especially suited not only for those whose lives are just beginning, but also for those whose lives are drawing to a close.
And so as the nurses cleaned Mrs. Wolfson’s broken body, as they gently scrubbed her with soap and then let the warm water wash over her frail limbs, carrying away the dirt and grime of a daily battle with cancer, they sang:
You are my sunshine,
My only sunshine.
You make me happy
When skies are gray.
You’ll never know, dear,
How much I love you.
Please don’t take my sunshine away.
Of course, giving Mrs. Wolfson such a bath once, let alone multiple times, was a very labor-intensive process. It meant that three fewer nurses’ aides were available to the fifty-two other patients that CT Hospice might be caring for on any given day. It meant that there had to be a nurse not only on duty, but also available should anything go wrong.
“Standard nursing home levels of care would not have been able to do this, in short,” Dr. Wolfson said.
If Dr. Wolfson is right, many patients like his wife won’t be getting such baths in the future. For the first time since the establishment of regulations governing hospice care, the Department of Public Health has proposed changes that would make the regulations more in line with those governing standard nursing home care.
Regulations for hospice care were first put into effect in 1977, when CT Hospice sought to open its doors. CT Hospice was the first hospice in the country to open, and the regulations were tailored specifically to it. They were especially strict because the idea of a facility devoted to end of life care was so novel and because people feared for the wellbeing of those nearing their final days. Pages were devoted just to the kinds of arts programming the facility would need to provide.
The proposed regulations seek to modernize the delivery of hospice care and increase access. In order to do so, they relax the previous regulations—for instance, an onsite pharmacy would no longer be required. Another change is the replacement of a nurse to patient ratio of one to six with the requirement that facilities have “sufficient” staffing and services. “Sufficient” means there will still be a Registered Nurse present twenty-four hours a day, with additional staff available based on how many patients are at a given facility and what their medical needs are, explains Tracy Wodatch, vice president of clinical and regulatory services at the Connecticut Association for Homecare and Hospice, of which all twenty-nine hospices in the state are members.
Costs were not a major factor in the changes made to the regulations, said Deborah Hoyt, president and CEO of the Connecticut Association for Homecare and Hospice. Medicare tends to reimburse patients for hospice care on a case-by-case basis depending on the amount of time they stay and the degree of care they need, she said. Still, some of the proposed changes, such as the elimination of an onsite pharmacy, could save money for facilities and patients alike, Hoyt added.
Many worry, however, that the relaxation of these regulations, and especially the elimination of required nurse to patient ratios, will be detrimental to the health and well being of the patients.
“The parts that for me are the most problematic are the nurse to patient ratios, and then among the nurses the percentage that are RNs versus [Licensed Practical Nurses],” said Elizabeth Bradley, a professor of public health and nursing at the Yale School of Public Health. The ability of a nurse to think ahead, to anticipate and reason in terms of diagnostics, “makes a huge difference for the patient,” she said, and RNs are more qualified nurses. While RNs need a four-year degree, LPNs need only about a year of study.
Dr. Wolfson agrees that the importance of set staffing levels should not be underestimated. “The people who are referred for inpatient care at an inpatient hospice facility are not only dying, they’re also critically ill,” he said. “If the goal is for them to die in comfort, then a good staffing coverage level is vital.”
And though proponents of the regulations argue that staffing levels will still be strong, just less strictly managed, opponents of the regulations are far from convinced.
“With language like ‘sufficient’ staff with no definition of what that means, the whole reputation of hospice care that lets people die with dignity goes out the window,” said Luis Gonsalez, director of planning, training, and research at CT Hospice in the John D. Thompson Hospice Institute.
Ronny Knight, the senior vice president of CT Hospice, has statistics that perhaps give credence to Mr. Gonsalez’s assertion. According to a 2007 study by the Hospice Association of America, the average nurse to patient ratio for an inpatient unit was one RN to 8.6 patients, the ratio at a hospice residence was one nurse to twenty-seven patients, and the ratio at CT Hospice is one nurse to six patients, he testified at an April 4 Department of Public Health hearing about the proposed regulations. In other words, at CT Hospice, nurses are responsible for far fewer patients than nurses at other facilities.
“There’s nothing in these regulations to prevent this minimal standard of care other than a discretionary directive to provide sufficient staffing. This latitude will assure more profit, less staffing and less care as a likely outcome,” he continued.
More simply, some fear that fewer nurses mean fewer chances for patients to feel clean and cared for.
Shatreen Masshoor ’12 has had experience with facilities that don’t have adequate staffing. She hopes to someday become a doctor, and she took time off from school to become a Certified Nurse Assistant and work at a skilled nursing facility in Washington state for a little over a year. Now, she volunteers at CT Hospice for three hours once a week during the school year, and she can see the difference in care provided at the two facilities. She remembers coming in to the skilled nursing facility one day and finding a patient who hadn’t been checked on all night. The patient had multiple bowel movements and a wet bed, something she has yet to see at CT Hospice. And while patients at the skilled nursing facility in Washington state were only washed a couple times a week, at CT Hospice everyone gets at least a bed bath every day, she added.
“It seems like they’re pretty on point about it,” Masshoor said.
The proposed changes in the state regulations were prompted by changes to federal standards, Wodatch said. All hospices must comply not only with state standards but also with federal ones, specifically the Medicare Conditions of Participation, which were updated in 2008. They must also comply with Connecticut Home Health Care Regulations.
The Department of Public Health is currently in the process of reviewing the proposed changes, spokesman for the department William Gerrish said. Twenty-eight hospices in Connecticut support them, and CT Hospice opposes them. The hearing April 4 was held so that the Department of Public Health could hear testimony about the regulations, and over fifty individuals spoke.
After reviewing the testimony and making any changes it sees as necessary, the DPH will send the regulations to the attorney general’s office, Gerrish said. From there, the regulations will go to the regulations review committee for final approval. The regulations will be implemented upon the approval of the committee, he said.
Modernization, streamlining care, creating a more home-like environment, and improving access are the main goals of the proposed changes, Wodatch said. The new regulations are more patient-based, focusing on quality outcomes rather than specific guidelines, she said. Although hospices would no longer need to meet certain nurse to patient ratios, they still would need to meet quality outcome assessments and standards, she said.
“1977 to now is light years away,” said Carol Mahier, executive director of Hospice Southeastern Connecticut, which last year serviced 629 patients in New London county and is planning to open a new facility under the proposed regulations.
In addition, according to the latest data from the National Hospice Palliative Care Organization, nearly one in five hospice agencies in the country operate an inpatient unit or facility. Those numbers mean that out of the county’s five thousand hospice facilities, one thousand have an inpatient unit, Wodatch said at the April 4 hearing. Only one of those is in Connecticut, she added. That facility is CT Hospice, and proponents of the regulations say that it alone is not enough, even when the two other facilities in Middlesex and in Stamford that have inpatient units but are not licensed as hospices are taken into account. Wodatch pointed out during the April 4 hearing that while the average national time for a patient to spend in hospice is seventy-one days, Connecticut ranks last in the country, with an average stay of only forty-eight days.
Moreover, the need for hospice care continues to rise. Demand for hospice care is growing at a rate of nine percent per year, Hoyt wrote in a letter to the editor published in the New Haven Register.
“Patients can be placed in a hospital, but that is not where somebody usually wants to die,” Mahier said, adding that a nursing home is also not really a place a 40-year-old who is dying would want to be either. “A residence is what’s needed,” she said.
If the new regulations were to pass, the Rosenthal Center would apply immediately for a new license as a hospice, and Hospice of Southeastern Connecticut and Regional Hospice of Western Connecticut are among the facilities that would attempt to put a freestanding facility up, Wodatch said. The new facilities would mean that patients in counties such as New London wouldn’t have to drive hours to visit loved ones at CT Hospice.
Opponents of the regulations, however, argue that the claim for the need for access is unwarranted. Hospice facilities can offer patients rooms in both hospitals and nursing homes—indeed, CT Hospice has two to three beds in many hospitals on reserve—and so any patient who needs inpatient care can find it relatively easily, Gonsalez said.
In fact, Bradley says there isn’t really an access problem at all. Bradley has done research on hospice care for over a decade, looking at what makes people choose hospice, why hospices are underutilized, and the effectiveness of hospice programs across the country.
Her research has shown that ninety percent of all patients in Connecticut are within thirty minutes of access to a hospice. “For me, I don’t really see the positive of making the legislation looser,” she said.
In fact, her research indicates that Connecticut is one of the four best states in the country for hospice care. Connecticut exceeds the federal Medicare standard, she said. “It’s really a flagship.”
In addition, staff members at CT Hospice argue that no one is stopping the other hospices from opening facilities under the old regulations if they feel they’re necessary, regardless of what may be written on websites or published in letters to the editor in newspapers such as the New Haven Register.
“There has been misleading media insinuating that Connecticut Hospice has had a monopoly on inpatient hospice care and that in some way we have restricted access to patients and families in Connecticut. Let us all be honest in this room. Every hospice in Connecticut must provide inpatient level care in order to have their hospice license. There is access. Similar to Connecticut Hospice, no one has kept you from becoming licensed under [the current regulations],” said Susan Flannigan, director of hospice at CT Hospice, at the April hearing. “No one has denied the patients and families access to this level of care except your organization.”
For Dr. Wolfson, this particular part of the debate is in many ways not relevant. CT Hospice is about a twenty- to thirty-minute drive from his home. Still, he considers quality of care to be worth more than any commute.
“I would’ve gone three hours if it had been necessary,” he said.
Diana Stoianov ’13, one of the more than five hundred volunteers at CT Hospice, began her weekly shift as a volunteer by stopping in to check on a group of patients. At CT Hospice, four patients usually live together in one room, though any patient with an infectious disease is transferred to a private room to avoid contamination. Three of the four patients in the room she was checking in on were sleeping. She could hear them breathing with a death rattle—a gurgling, choking sound dying patients often make as saliva begins to accumulate in their throats—but that wasn’t what surprised her. After almost two years of volunteer work she was quite accustomed to that sound.
What surprised her was the fourth patient in the last bed on the right, who was sitting in a chair watching the news on TV not in the hospice gown but instead in ordinary clothes. Stoianov was not used to seeing patients who were well enough to get out of bed—usually if someone gets up on their own, she feels an almost automatic sense of alarm.
The patient was a middle-aged man, and she sat down to talk with him. She didn’t know what was wrong with him—volunteers never are told why patients are dying, just that they are—but they connected over a discussion of how ludicrous the news sometimes becomes. At the time of her visit, the revolution was taking place in Egypt, but the news station was broadcasting another piece about celebrities. They chatted for a while, something she said nurses would love to do with patients but never really have time for. And then it hit her.
The patient seemed to her like a “normal person,” and she was in a place filled with people who were more obviously dying. Across the room were patients struggling just to fill their lungs with oxygen, and she suddenly felt the need to be elsewhere, to be doing something other than sitting and talking with a man who seemed just fine. She turned to the patient, told him it was nice to meet him, and got up to leave. “It was nice meeting you too,” he told her. “Stop by whenever you have time.”
As Stoianov walked out of the room, she looked back once more and saw the man, sitting in a room filled with people so sick they couldn’t interact with him at all, and she felt a new wave of emotion wash over her. She imagined how lonely and scared he must have been feeling at that moment, and though she continued with the rest of her volunteer duties—washing other patients, stopping to peek in other rooms, carrying out the trash—she couldn’t stop feeling guilty for leaving him behind.
The debate about the new proposed hospice regulations is really out of Stoianov’s realm—volunteering at hospice has been one of the formative experiences of her time at Yale, but when she graduates she does not plan to seek out hospice work. Volunteering at CT Hospice has been a singular moment in her life, Stoianov said, and she wants to do as much as she can in her four years of college before moving on to the next chapter. Part of her doubt about continuing to volunteer at a hospice hinges on the fact that she probably won’t stay in Connecticut after graduating, and she can’t really imagine volunteering somewhere other than CT Hospice.
When Stoianov went back to CT Hospice to volunteer again, as coverage of Libya competed with news of the royal wedding, she stopped in on the patient she had once watched TV with. He was in bed, in the hospice gown, sleeping, and she didn’t disturb him.
Many of the arguments against the proposed regulations are emotional ones, Mahier said. People get so caught up, so worried, they don’t think about the facts, she added.
“Everything that’s being said about how these regulations will lessen care, these are all not true. When we meet those negative statements, and when you look at the [Department of Public Health] who wrote them, and the twenty-eight hospices who support them, it is surprising,” Mahier said. “I guess it’s about not having competition. I don’t know what it is.”
The statements about the lowered quality of care are ones she classifies as troubling. “I’ve done this for twenty-four years. Why would I ever want to do anything less than the best for someone who’s dying?” she said.
Gerard Lamoureux, a certified nurse aide at Regional Hospice, also thinks that concerns about lower standards are unfounded. “People keep talking about substandard care and lower levels of care and all that kind of stuff, and I don’t think Hospice-R-Us are going to start popping up on every corner with this regulation,” he testified at the hearing.
Still, even the most staunch supporters of the proposed regulations are the first to say that CT Hospice is a special place. The facility is, at first glance, undeniably beautiful. It is situated right near the Long Island Sound, and each patient bedroom has a massive glass window that looks out onto the water. There are multiple pianos, and music can often be heard floating down the hallways.
Through a wooden door carved with a tree—the Tree of Life—and down the hallway is a small chapel. Inside it is a wooden cross, fresh flowers, and pale light brown chairs on which to sit and pray. A large wooden table in the center contains a book filled with long strips of paper honoring patients who have passed away, with their names and words like “Rest in peace” and “We miss you” scrawled in cramped, loving letters. There is a swimming pool for kids to use in the summertime. Each day, the carpeting of the elevator is changed to display what day of the week it is in bright orange letters.
The words “I love you” are painted onto one white wall of the cafeteria in a myriad of bright colors, over and over again in many different languages. On another wall, in bold blue letters, is written, “Love matters. Hospice nurses are #1.”
Each patient is given a brightly covered afghan, made by CT Hospice employees, upon arrival, Gonsalez said. The afghans can be seen everywhere, draped across the low sofas that line the hallways, positioned at the end of a patient’s bed, or nestled around a frail pair of shoulders, a brilliant splash of color against pale, translucent skin.
But it’s not just the facilities themselves that set CT Hospice apart; it’s also the services they offer, the care they give to each and every patient.
“CT Hospice has found a way to institutionalize love,” Dr. Wolfson said.
A few hours after her arrival at CT Hospice, Mrs. Wolfson and her husband attended a concert, hands clasped together. That concert was the first of many Mrs. Wolfson attended. Though her broken arm limited her, she participated in other arts programming that CT Hospice offered as well. Her own rabbi came to visit her often, but she still also participated in the spiritual counseling provided by CT Hospice, lighting Shabbat candles one Friday evening with an evangelical minister after he offered to pray with her.
Arts programming and spiritual counseling will not be as strictly mandated under the proposed regulations. Currently, arts programming at CT Hospice is taken very seriously. There is a full time director, seven paid staff, including clinical therapists, and forty volunteers, and services are offered every day of the year.
“More and more healthcare organizations across the country are introducing art and music therapies as their advantages become more widely known. In contrast, the proposed regulations make arts therapies an afterthought barely mentioned as a remote option under complimentary therapies,” testified CT Hospice arts programming director Katherine Blossom at the hearing.
Mahier said that though arts programming may not be written into the regulations, it is still an important part of Hospice Southeastern Connecticut. “We’ve had an arts room where little kids come to work through grief since 2003,” she said. “It’s integral to what we do.”
But others worry that not every hospice will follow through without a regulatory mandate.
“My experience with regulation—I’ve done other studies as well—is actually if you leave it loose, there will be some providers will go for the low road on that. If you leave it loose, if you say, ‘Oh it’s up to you if [your] patients want arts,’ there will be lot of hospices that don’t do it,” Bradley said.
Physical therapy isn’t mentioned much in the new regulations either, but it too was of great importance to Mrs. Wolfson. Initially, she could barely get out of bed, but after a week or two, she was able to take her first steps again. Soon, she could walk ten or fifteen feet, with her husband trailing behind her with a chair so she could sit down when she got tired.
“For someone who is clearly dying, this is something that is not necessary, but she felt so good about being up,” Dr. Wolfson said, highlighting what Bradley sees as one of the biggest misconceptions about hospice care.
“A lot of people in the public think hospice is the place you go to die,” Bradley said. “I think it’s much more true that it’s a place to live for the days you have left.”
Mrs. Wolfson was in intense pain when she arrived at CT Hospice. But within a half-hour of transfer, she was very nearly pain free. She was well enough to host three parties, one of which featured a performance of “You Are My Sunshine” by the nurses aides who gave her baths, and she was well enough to spend time with the hundreds of friends who came to visit over the course of her five week stay.
Mrs. Wolfson was given relief so quickly because at CT Hospice, a history is taken and physical completed by a physician within twenty minutes for every single one of the three to four patients that are admitted each day. The new regulations state that the initial assessment of a patient should be done within forty-eight hours.
“I can’t tell you how critical this is,” Bradley said. “Ten to fifteen percent of patients will be dead in forty-eight hours. [The initial assessment] should be done immediately. Forty-eight hours of pain when you have terminal cancer? That’s out of control. That’s inhumane.”
When asked, Mahier was quick to point out that the regulations don’t mean patients who need to be seen immediately won’t get seen. “It’s standard wording,” she said. If every patient had to wait forty-eight hours, then the quality outcomes of the hospice facility would be poor, and the new regulations would mean that facility would have to make changes.
Wodatch added that the facility has forty-eight hours unless a patient, representative, or physician requests an expedited time frame, and said that immediate needs would also mean an immediate assessment under the Medicare Conditions of Participation, which all hospice facilities across the states are required to follow. On the other hand, if a patient is not in great need, such as a patient living at home who would like some hospice assistance, an immediate assessment would not be necessary, she said.
Another component of hospice care that was extremely important to Mrs. Wolfson’s well-being in her final weeks was the availability of an onsite pharmacy so that medications could be quickly and adequately administered, Dr. Wolfson said.
Proponents say that just because there isn’t a pharmacy onsite doesn’t mean hospice patients won’t have access to medication right away.
Robert Tendler, a consultant pharmacist employed by Omnicare Company, the nation’s largest provider of prescription medications to patients in long-term care settings, said he has attended 1,200 inter-disciplinary hospice team meetings, and simply doesn’t see the need for an onsite pharmacy. “I believe it would force the cost of maintaining inpatient services to skyrocket without a realistic benefit to the patient,” he testified at the April hearing.
Mahier doesn’t think they’re necessary either. Hospice facilities are dealing with a finite group of symptoms, she said. “This is what we do every day.”
“How many nursing homes do you know that have a pharmacy?” she added.
But James Proto, the head of the pharmacy at CT Hospice, said at the hearing that he can’t imagine care without one. He said he is an active member of the interdisciplinary team, doing rounds daily with nurses, something he wouldn’t be able to do if he weren’t onsite.
And Joseph Farricielli, who was involved in the passage of the original regulations and says he himself is quite familiar with how regulations get written, asked those at the hearing to consider that changes made today “under the best of intentions” to improve access may destroy the “high goals that were set in motion thiry-two years ago.”
“There’s an analogy about regulations. Once you take away something or you reduce it sometimes it’s hard to bring it back.” he said. “It’s like a chair that has a short leg. You can’t add to it, you have to cut the other legs. And so as we start to eliminate or hack away at the regulations we may generally reduce the level of care.”
Mrs. Wolfson’s last bath took place at 2 a.m. the night before she died. After five weeks of controlled pain, her symptoms had begun to return, and CT Hospice upped the level of her narcotics. For the last two days of her life, she slept.
“I think in almost any facility other than CT Hospice they would have done that to her at the beginning and we would’ve all missed the opportunity to say goodbye,” Dr. Wolfson said.
But instead, after five weeks with her, Mr. Wolfson and his two children—both in their forties, one living in California and working as a Hollywood producer and one finishing her doctorate in theater studies—took turns spending the night with her those last few days.
And then one night in June of 2005, as the nurses’ aides made their usual late night rounds, they asked Dr. Wolfson if he thought Mrs. Wolfson would like a sponge bath. He said yes, and at their encouragement he helped them bathe her. During that bath, the nurses saw signs that the end was near, and they gently informed Dr. Wolfson. He called his children and they came to CT Hospice to be with her.
That morning, as the sun slowly rose in the sky, orange and welcoming, and broke out across the water of the sound, turning it sparkling and new, the 67-year-old Mrs. Wolfson quietly passed away.
On a morning last April, approximately six years later, Dr. Wolfson rose to speak against the proposed regulations to hospice care at the public hearing. “I urge you not to do this,” he testified.
Photograph: Brianne Bowen