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February 1, 2021 marked the 2nd anniversary of new leadership taking over The Connecticut Hospice. It was a relief for the staff when Barbara Pearce, CEO, and Joseph Mooney, CFO, arrived bringing hope for American's 1st Hospice. And, while it is no secret of the mountain of challenges and changes the non-profit has been through over the last two years, it isn't until you hear them spoken out loud that it becomes apparent that Connecticut Hospice is resilient.
In a recent interview, Barbara Pearce, CEO, shared her recollection of her last two years at Connecticut Hospice, with Bruce Tulgan, creator of The Indispensables podcast. Listening to Barbara share the numerous and sometimes grueling challenges the organization has faced during the last two years, it becomes clear why Connecticut Hospice has been around for forty-seven years -- hospice care started at and continues at Connecticut Hospice.
Use link below to hear the full podcast.
The Indispensables Podcast
Conversations with real go-to people who stand the test of time in the real world of work. Based on Bruce Tulgan's new book, The Art of Being Indispensable at Work, The Indispensables is a podcast series about how real people, in the real world, become indispensable, go-to people who stand the test of time at work. For more information, visit Rainmaker Thinking.
"Connecticut Hospice may not be able to add days to your life, but it can certainly add life to your days." -Barbara Pearce
If you have ever wondered, "What happens at hospice?" or, "What to expect for hospice care?" This post will walk you through a day in the life of a hospice.
People have preconceived notions about what hospice life must be like, and it usually involves words like “depressing”, “sad”, or “painful”. Connecticut Hospice, the country’s first hospice and a pioneer in end of life care for almost fifty years, is none of those things.
If one were to walk onto the inpatient floor, very early in the morning, the first impression is one of peace and quiet. There are no beeping machines, overhead lights, or loudly speaking caregivers, that characterize so many other health care institutions. Here, they are still hours from breakfast, with family members who have slept on a cot at the bedside of a loved one roaming the halls, looking for fresh coffee on each end of the floor. Nurses and doctors are whispering morning greetings, and huddling about the patients and their conditions overnight. Everyone who is awake is soon watching another beautiful sunrise over Long Island Sound. No matter the weather, or the season, it’s always a joy to see the sun come up over the water at our 52-bed, waterfront inpatient facility.
On the other floors, home healthcare nurses and aides are picking up supplies, checking in with supervisors, and communing over whatever snacks have been left out by grateful families. Maintenance and kitchen workers are going about their days, while office workers are settling in for the morning. The pharmacy is buzzing with activity, as they calibrate dosages and adjust drugs after the night reports are in. Early birds have begun to churn out their work, while other offices await occupants.
Not everyone wears scrubs, but many do, especially if they interact with patients. Nurses and Certified Nurse Assistants each have special colors, except on Friday, when any color goes. The holidays bring a relaxation of the color rules, and a lot more red and green apparel is seen, along with reindeer headbands. In other departments, people can wear any color, though the current favorite is probably black, which is far more chic than the baggy blue handed out to staff. One such fashion plate has even had his monogrammed!
9 AM is midmorning for some, but many other people are still arriving. The official start of many homecare days is the IDT meeting. That stands for Interdisciplinary Team, which is what Medicare requires for care coordination. Our comprehensive approach to hospice and palliative care is delivered by a medically directed, nurse-coordinated, interdisciplinary team, which consists of hospice and palliative board-certified physicians, nurses and pharmacists.
Despite its being required, many professionals have come to love the IDT meetings. Much of their time is spent on the road and working alone with patients and families, so they value the camaraderie and mutual support of the IDT. Teaching also takes place, with doctors and supervisors sharing medical knowledge or regulatory updates. The meeting can last for two or two and a half hours, after which everyone rushes off to begin daily home and nursing home visits. Once a week, the inpatient care team holds the same IDT meeting, where colleagues who do work together every day pause to consider treatment options and suggestions.
By midmorning, visitors have begun to arrive. The front desk is staffed all day and evening, often by volunteers. They kindly greet each arriving party, explain the CT Hospice rules (especially during COVID), and comfort those waiting for a turn to go upstairs. Sometimes the lilting music of a grand piano drifts down the entrance hallway, where a volunteer plays for those who gather. It is not unusual to see a wheelchair or a bed rolled in for an impromptu or planned concert.
Those who work in support capacities are in full swing, paying bills, raising charitable funds to supplement Medicare reimbursements, hiring new staff members and volunteers, keeping track of all the rules and regulations that govern a hospice’s existence.
On nice days, families often take their loved ones outside. All the beds can be moved, and there is often a staff member or volunteer to help a patient who wants to be in the sunshine, but doesn’t have someone visiting. Small groups can be seen outside around the beds, at picnic tables scattered over the rolling lawn, or in the gazebo down by the double beach that gives the street its name. At high tide, that beach disappears, but, at low tide, family members can be spotted climbing on the rocks and enjoying the view. Raised flower beds grace the exit doors, reminding everyone of the circle of life.
Lunchtime for patients happens as one would imagine, with trays delivered to beds. It’s not uncommon, however, to see a peach, some potato chips, or another treat sent up from the kitchen for a patient with a sudden craving. Some visitors bring favorite foods or drinks, while others (including staff), use delivery services from nearby restaurants. The staff eats on a separate floor, where the table is often piled with goodies brought by family members, or donated by outside groups. Halloween and Christmas both involve lots of extra calories!
All afternoon, there is a steady stream of ambulances delivering patients, or transporting respite patients back home. Each new arrival is greeted efficiently and compassionately. Those who enter in pain are usually made comfortable right away. By then, the evening shift has taken over, and new nurses and CNAs are checking on patient comfort levels, calling family members with updates, or attending to documentation on rolling computer trays.
Music and art therapists are going bed to bed, helping patients with requests or just easing loneliness. They have made videos for loved ones, collages, sketches, or other mementos. They help make Facetime calls to relatives, on iPads there for that purpose and play music that releases and relives old memories. Volunteers are also in full swing, either sitting quietly with those resting or wanting silence, chatting with others wishing for company, or playing music in the hallways. Some bring pets trained for visitation in hospitals, and they are particular favorites of everyone! Pastoral care professionals and volunteers visit each bedside, arrange for outside clergy when requested, pray with families, offer use of the prayer room tucked away down a side hall, or hold services in the common room.
As the sun sets, people pause to mark its beauty over the horizon, and begin winding down. Visitors still come, at all hours of the day and night, and the building is open around the clock. Cots are brought for those who plan to stay overnight. Clerical and support staffs head home, and the activity level goes down. People are still admitted during the off hours, but most are there, ready to be tucked in for the night.
And what of the patients in the beds? How does all of this activity affect them, in their final days? As many people have noted, at the end of life the days left are short, but the hours can be long. Decreased mobility, motivation, or purpose can diminish quality of life during a terminal illness. Volunteers, therapists, social workers, clergy, and medical staff all strive to help patients achieve closure, whatever that means for them, find peace, and eliminate pain and fear. To an astonishing extent, they succeed in that mission most of the time. Patients live fully until the end of their time, and find meaning and enjoyment wherever possible. As one patient famously said, “I came here to die, and I learned how to live.” They are the center of the hospice community, and they bask in that attention and concern.
Elsewhere in the facility, workers are still cleaning, cooking, fixing things, writing reports, and getting ready for the next day. Someone is always around, answering the phone for anxious family questions, dealing with crises in home care or in other settings, or completing yet another written report. Sometime during the night, someone changes the mat in the elevator to display the next day’s name (today is Wednesday), and another day begins, softly and lovingly.
In the interview, Barbara discusses what differentiates Connecticut Hospice from other end-of-life care programs in Connecticut, including our rich history as America's first Hospice. Barbara also references our founder, Florence Wald, former dean of the Yale School of Nursing.
Barbara speaks about how Connecticut Hospice is making significant efforts to continue allowing visitors during COVID. As a holistic program that values patient and family-centered care, Connecticut Hospice understands how important it is for patients to see their loved ones during end-of-life care, most especially during the holidays.
The article also features footage of the glorious water views of Long Island Sound and the beautiful grounds for visitors to gather in larger (up to five people) socially distant groups.
For the month of December, Connecticut Hospice is lighting up the grounds with many trees strung with holiday lights in memory of loved ones. Supporters can sponsor fully lit trees or individual strings of lights or menorah bulbs.
There are also fully decorated trees on display in the lobby that have been donated by organizations and individuals. The decorated trees are offered in a silent auction, which is running through December 13th, 2020.
Barbara offers a special thanks to the Branford Rotary Club who has helped tremendously with the Lights of Love virtual fundraiser, including putting up all of the holiday trees.
"Connecticut Hospice may not be able to add days to your life, but it can certainly add life to your days." -Barbara Pearce
Fashion often seizes on wearables that have been introduced for functional reasons. Take leggings, for example. First a sports-only item designed for unencumbered movement on a bike or in a gym, now people wear them for style and own several pairs. Jeans? These sturdy pants designed for laborers are now stacked in so many closets in multiple washes, lengths and cuts. Glasses too – I remember my first pair was pretty basic. Now one finds glasses frames to fit their face shape and their personal style. If you browse online for frames you can try them on virtually; it’s amazing.
This past March, I wore my first face mask. It felt strange. I decided early on that voluntarily wearing a mask would feel awkward and make me stand out in my neighborhood. I also believed that wearing one was going to protect me and other people. If other people were going to wear them (to protect me and themselves) it seemed important that we normalize mask-wearing, the sooner the better.
I was walking down the street last spring and came upon some of my friends standing and talking. Everyone stood at a distance but I was the only one wearing a mask. One friend is a surgeon who worked at a hospital where cases were rising and protocols were evolving. With his daughter at his side, he called out to me, “That mask isn’t going to do anything for you, and they can even cause harm. If everyone starts wearing masks, they’ll increase demand for N-95 masks that are needed in the hospitals. The mask you are wearing does nothing.” He gently mocked me for wearing it. I said that I’d heard that argument but also some different well-informed opinions on the efficacy of mask-wearing. He replied that I had a false sense of security with the mask and that others would too. Slowly but surely over the spring into the summer, masks became more common than not; it’s unusual to see someone without one (even my surgeon friend).
The truth is, an N-95 mask is the most effective due to the random pattern of its fibers and its electromagnetic charge to attract and trap aerosol particles. A mask made of tightly woven cotton or an ordinary surgical mask does an excellent job too, especially if two people who may be near each other are wearing them. The small amount of particles that escape one person’s mask, if they even manage to reach the other person, are filtered yet again by their mask – vastly decreasing the transmission of coronavirus particles.
Possibly the most important factor in mask-wearing is the way the mask fits. It should be ample in size, snug against the face, and in a shape that allows breathing space inside the mask. A loose mask leaks particles. This is why wearing a bandana that is open below the chin offers very little protection.
Always wear your mask over your nose, make sure your chin is covered, and keep your mask snug. Discard disposable masks, and frequently wash the cotton ones. If you need to go indoors, you can even slip a coffee filter in your mask for another layer of protection.
It may be that one day soon, we will not strictly need to wear masks, or will use them for certain situations, like at movie theaters or basketball games. One thing for sure is that right now, masks are essential. And if wearing them everywhere is not mandated by law, most institutions, including banks, hair salons and certainly healthcare settings, require them, for good reason.
Wearing a mask feels inconvenient, but seatbelts probably felt that way in 1966, right? Did you know that in the 1940s and 50s, even as scientific research demonstrated that they saved lives, many people asserted the opposite, and even cut them out of their cars? So many lives were lost before seat belts became mandatory. Let’s not make the same mistake with masks.
Small confession: I may go from reluctant user to enthusiastic wearer of masks this winter. They do a nice job of keeping my face warm. And back to fashion, lots of people have several masks, and they even think about matching the sweater they are wearing, or matching the weather. Some have straps, some ear loops, some velcro, are printed with creative patterns and colors and even political statements . . . are masks becoming a style item? After all, we wear them on our very faces! I myself have some fall colors in mind for the next ones I make. And apparently, designers and shops like Lily Pulitzer, Uniqlo, Levis, Etsy, even Louis Vuitton and Gucci – are standing by to help!!!
Sources:
Wisconsin Public Radio, The Surprisingly Controversial History Of Seat Belts September 25, 2017 read the article
New York Times, How NOT to wear a mask, April 8, 2020 read the article
New York Times, Masks Work. Really. We’ll show you How, October 30, 2020 read the article
LeviStrauss.com The History of Denim, July 4, 2019 read the article
When one enters The Connecticut Hospice, it becomes almost immediately clear what a nurse-centric place it is. There’s a reason for that, and her name is Florence Wald. She was our founder, often called the Mother of Hospice in America.
For many years, the nurses have asked for a picture of our founder on the inpatient floor. Through the good graces of two retired Connecticut Hospice nurses, Gen O’Connell and Dianne Puzycki, and portrait painter, Angela Rose Agnello, (daughter of staff nurse), we unveiled the portrait of Florence Wald on the second floor yesterday, to great applause.
We have written elsewhere about our history, and the long list of our accomplishments, but it’s important also to understand just how Florence Wald changed the care of patients with terminal illnesses. After she spent time at the world’s first hospice in London, Saint Christopher’s, she returned with determination to alter the course of end of life care.
At that time, in the early 1970s, people often wouldn’t even say the word “cancer” out loud. Some of you remember when it was referred to as the “Big C”. There were even those who feared that cancer could be contagious, and were afraid to be too close to those who had it. Of course, in those days, the likelihood of survival was much lower. Sometimes, doctors didn’t tell patients, or families, what the course of the disease would be, or that person’s prognosis. This led to people dying without closure, or with survivors only beginning to process their grief.
For all these reasons, Ms. Wald decided early on to focus on the care of cancer patients. She was a force of nature, and was determined to change what many doctors and nurses considered standard practice at the time. Researchers can read many of Florence Wald’s papers, thanks to the Yale School of Nursing.
Of particular concerns was what happened to those left behind, especially children of cancer patients. This might not be considered a good idea by many, but she got involved in the lives of the families, even taking some of the children home with her. She wanted them to have the comfort they weren’t getting in the medical system of that time.
Medicare set up what are now known as COP, Conditions of Participation, and they govern what hospice care needs to include. One of those requirements, 13 months of bereavement care for the survivors, is now practiced everywhere, and most likely came from those early principles espoused by Florence Wald.
Much of what we consider essential for death with dignity also harks back to those first patients. We now have a Plan of Care for everyone, and patients participate to whatever extent they can in planning for their end of life care. Doctors are now taught in medical school to have those difficult conversations, although many of them say that much more training is necessary. And, even though there is still a tension between the medical profession’s drive to keep patients alive, and the realities of the likely outcomes, we do see people choosing palliative care, when curative treatment becomes risky or speculative.
Cancer is not a verboten word anymore, but our tradition of treating the dying, no matter the cause, continues. We took wonderful care of AIDS patients in the early days of that scourge, and today we accept COVID-positive patients into our care. We try to give patients peace, comfort, freedom from pain, and closure, in whatever form that takes for them.
Florence would have been proud of us when we arranged for a dying man to say goodbye to his horse on our lawn, or when a social worker put another man’s feet into buckets of water pulled up onto his bed, so that he could feel the seawater one last time. Or, when a patient got to experience one last surprise birthday celebration, and share it with her family living on the other side of the country.
We are grateful for the wonderful legacy we have from Florence Wald and those early nurses who toiled alongside her. The world is a better place because of her work, and what better closure could there be to a life?
Caring for patients in a hospice setting is a nurturing and supportive effort that draws on the expertise of professionals engaged in many disciplines, ranging from medical to therapeutic. Indeed, the services offered by a leading hospice, such as The Connecticut Hospice, may in fact be broader and the care offered patients more varied than what is typically pictured by members of the public.
Even so, hospice-service providers remain concerned about the number of persons accessing hospice care late in the course of an illness. That’s per a new report issued by the National Hospice and Palliative Care Organization (NHPCO), which states that “53.8 percent of Medicare beneficiaries received hospice care for 30 days or less in 2018.”
More telling, is that fully a quarter (27.9 percent) of the beneficiaries received care for seven days or less— which NHPCO considers “too short a period for patients to fully benefit from the person-centered care available from hospice [providers].”
“This annual report provides a valuable snapshot of hospice care access and care, and also a reminder that we must continue to strive to make hospice care more equitable and accessible,” said Edo Banach, NHPCO president and CEO, in a statement. “It is also important to remember that behind these numbers are people who rely on person- and family-centered, interdisciplinary care to help them during a time of great need.”
Of compelling interest to hospice patients and their family members and friends are sections within the full 26-page report on what hospice care entails, how and where that care is delivered to patients, and what are the levels of care provided.
“Hospice focuses on caring, not curing,” NHPCO observes. “Considered the model for quality compassionate care for people facing a life-limiting illness, hospice provides expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s needs and wishes. Support is provided to the patient’s family as well.”
The report also points out that, in most cases, “care is provided in the patient’s home but may also be provided in freestanding hospice facilities, hospitals, and nursing homes and other long-term care facilities. Hospice services are available to patients with any terminal illness or of any age, religion, or race.”
Indeed, the term “hospice” is somewhat elastic. It describes any approved provider of hospice services, including those that operate free-standing hospice inpatient hospitals and those that bring hospice care directly to patients where they are, be that a long-term care facility or in their own home.
The Connecticut Hospice (also known as CT Hospice) fits both descriptions, as it operates its own hospice hospital in Branford and fields teams of hospice medical professionals and caregivers to provide services at other caregiving facilities where patients are residing or right in the patients’ homes.
When hospice services are provided as in home, a family member typically serves as the primary caregiver and, when appropriate, helps make decisions for the terminally ill individual, notes NHPCO. “Members of the hospice staff make regular visits to assess the patient and provide additional care or other services. Hospice staff is on-call 24 hours a day, seven days a week. The hospice team develops a care plan that meets each patient’s individual needs for pain management and symptom control.”
An interdisciplinary hospice team usually consists of the patient’s personal physician, hospice physician, nurses, hospice aides, social workers, bereavement counselors, clergy or other spiritual counselors, trained volunteers, and speech, physical, and occupational therapists, if needed.
NHPCO lists these as interdisciplinary team services:
Nancy Peer, an Associate Professor for Hospice and Palliative Care at Central Connecticut State University, secured a bed for her son, Brian, who was dying of testicular cancer, so he could live out his last weeks at CT Hospice. “Every nurse that came in was not only compassionate… they would see how our son was doing and then they wanted to know how they could help us,” Peer recently told the Daily Nutmeg of New Haven.
Peer said that during the week Brian spent at the hospice, before dying at age 39 and leaving behind his wife of one year and his parents and a younger brother, friends and extended family were able to visit him and Peer and her daughter-in-law stayed with him. She remarked that the help he and his family received from CT Hospice was “priceless.”
The NHPCO report also details the four Levels of Care (as defined by the Medicare hospice benefit) that hospice patients may require. The levels are distinguished by the intensities of care provided relative to the course of a given patient’s disease.
“While hospice patients may be admitted at any level of care, changes in their status may require a change in their level of care,” NHPCO explains. “The Medicare Hospice Benefit affords patients four levels of care to meet their clinical needs: Routine Home Care, General Inpatient Care, Continuous Home Care, and Inpatient Respite Care.”
The report rightly credits the significant positive impact of hospice-care volunteers. “The U.S. hospice movement was founded by volunteers” and they “continues to play an important and valuable role in hospice care and operations.”
But volunteering is not a simple matter of stepping up to help others. The Connecticut Hospital, for example, requires that prospective volunteers receive a background check before coming onboard and then they are professionally trained by hospice staff to provide care and assistance to patients and their loved ones.
The importance of volunteers is underscored by NHPCO’s observation that “hospice is unique in that it is the only provider with Medicare Conditions of Participation requiring volunteers to provide at least 5% of total patient care hours.”
Volunteers typically provide service to others in these three general areas:
Spending time with patients and families (“direct support”)
Providing clerical and other services that support patient care and clinical services (“clinical support”)
Engaging in activities such as fundraising, outreach and education or serving on a board of directors (“general support”)
For information on volunteer opportunities with The Connecticut Hospice, please go to our website, www.hospice.com, or contact Joan Cullen at [email protected] or 203-315-7510.
The Connecticut Hospice is America's first hospice. It was founded by Florence Wald, and a group of nurses, doctors, and clergy, in 1974 and was the first of its kind in the United States. A few years prior, Wald, then an Associate Professor and Dean of the Mental Health and Psychiatric Nursing Program at Yale University, was inspired by a palliative care lecture given by Dr. Cicely Saunders, the founder of St. Christopher’s Hospice, the first hospice in the world.
Today, CT Hospice’s services encompass both in-home and inpatient care for persons diagnosed with a terminal illness with a limited prognosis, normally of six months or less.
The Connecticut Hospice’s central commitment is to enable the patient to live as fully and completely as possible during the time of their illness. This includes supporting the entire family as the unit of care, rather than just the patient. For example, home-care programs are designed to make it possible for families to keep the patient at home if such care is appropriate, and to marshal community resources to help deepen support and keep care costs as low as possible.
As a not-for-profit, we depend on generous donors to help us provide customized services and therapies that aren’t completely covered by Medicaid, Medicare, or private insurance.
Please make a gift to help us sustain the highest standard of care.
Admissions may be scheduled seven days a week.
Call our Centralized Intake Department: (203) 315-7540.
