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“Palliative Care is specialized medical care for people with serious illness, focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for the patient and the family. Palliative care is an essential part of the care of anyone with a serious illness, including people who are continuing to be actively treated, and can not only help people get relief from symptoms like pain and shortness of breath, but also help them to better understand their illness and its treatment so they can choose the care that is right for them -- from ongoing active treatment to hospice.
Palliative care is different from hospice care because it is appropriate for people who are seriously ill and are continuing treatment. With exceptions, such as continuing routine medications for problems like high blood pressure or diabetes, people in hospice care are no longer being treated for serious or terminal illness. For example, people in hospice care are not treated with chemotherapy or radiation for cancer, and focus instead on the relief of symptoms.”
Joseph Sacco, Chief Medical Officer, The Connecticut Hospice
The terms “palliative care” and “hospice” are often used interchangeably, confusing patients and families alike. Many hospitals now offer palliative care services to those in pain. Some are in hospice care as well, some are having active treatment for their diseases, and some are only receiving palliative care for pain management.
Those of us in the field are often guilty of this confusion as well. Often, people who are resistant to the term “hospice”, but are past the point of curative care, are referred for palliative care instead, either to a home health agency or to a home hospice agency.
We have traditionally provided both palliative and hospices of care at the Connecticut Hospice, but have found that, almost without exception, the level of services is fairly comparable. For this reason, we have begun limiting the intake of palliative care patients, as we are judged by CMS, (Centers for Medicare & Medicaid Services) by their level of functional improvement.
Since many are at or near the end of life, little progress in the tasks of daily living is achieved, causing us to get very few stars in the government’s rating system. Hence our hesitancy in taking on patients with whom we cannot succeed, by the Federal definition, yet who truly need our help and care. This is a problem that needs addressing, both by the Federal government, and by physicians. Busy doctors are more likely to suggest palliative care, because it doesn’t carry the weighted overtones of “hospice”.
All of this overlap really goes back to the original Medicare definition of hospice eligibility, which was apparently set more or less randomly at six months of life expectancy at the normal disease trajectory. While that may mean very little in the case of an individual, it has become a catchphrase for our industry, depriving those who cannot be certified of important services, and deterring others who are loath to accept an arbitrary six-month prognosis.
Those of us in the hospice line of business believe that it’s past time to change that standard since the evidence is clear that many, if not most, hospice patients have their lives extended with the skilled and compassionate care that hospice workers give. In addition, people in the care of home hospice are frequently able to avoid or minimize time spent in hospitals and urgent care settings, which patients find very taxing and debilitating, without even considering the expense of multiple hospitalizations. If the time frame being discussed were twelve or eighteen months, more patients would likely choose home hospice, and possibly live as long or longer than with aggressive treatment.
The issue of continuing treatment is complicated and also seems to be transitioning. There are many patients who continue to seek treatment for their disease because they can, and, even if it’s a long shot, they don’t want to stop. Since hospice care is considered to be CMO (comfort measures only), and since hospices are required to pay for all treatment and equipment related to the patient’s diagnosis under hospice care rules, this means that we can’t afford to take someone who is undergoing treatment.
Palliative care is compensated at a much lower rate, meaning that caring for a very ill patient continuing treatment, but needing end of life care, doesn’t make financial sense for a home care agency, if that means that they are providing hospice level care, but being paid for routine palliative care. A terminal patient still having treatment is just as sick, or sicker than, a patient receiving comfort measures only, yet the payment for palliative care is far less than for hospice care. In the case of hospice care, even if an exception is made for certain types of treatment, the expense of that treatment puts it out of reach for hospice budgets.
When deciding on care for a loved one, all of these factors can come into play. It’s hard to discontinue treatment from an emotional point of view, even if it is causing side effects (although newer infusion therapies and immunotherapies are much more likely to be tolerated easily). Also, doctors are taught to cure, not to counsel acceptance of death. However, many patients live fuller, and even longer, lives when symptoms are managed and care is compassionate but not meant to be curative.
This is where the confusion of terms comes in: We would consider that symptom management is both hospice care and palliative care. From a home care billing point of view, however, the two are separate, with palliative care used to mean care for a serious illness where improvement is expected, and hospice care used to mean care for the same illness, once the goal of curing the disease has been foregone. To confuse matters further, Palliative care in hospitals can be “comfort measures only”, which is technically hospice care, or pain management. It’s no wonder that families get confused!
The most important starting point is for the patient and his/her support team to have an honest conversation among themselves, and with their treating physicians, about the effectiveness of current and future treatment, a true prognosis for the disease at hand, and the goals for that person’s life trajectory. Some will choose length of life, some will choose quality of life. Sadly, it often happens that assumptions are made, or hard truths are not voiced, so that treatment and care can be working at cross purposes.
If treatment is still desired, a hospitalized patient may still see a palliative care doctor, but the medical team’s efforts are aimed at gaining a cure, or a remission, of the illness. In many cases, this aim means that the patient may have more discomfort, both from the disease and from the treatment. Doctors also can’t know for sure how different people will be able to tolerate, or not, various regimens for treatment. Often, it is not clear early on whether treatment will work, so all of these factors need to be revisited regularly.
When a patient and his/her family come to the decision that comfort care is the way to go, our full attention can be mobilized in that direction. After decades of experience, we have become experts in delivering care whose aim is to fulfill wishes, promote comfort and closure, and relieve pain. Since our goals are less long term, tolerable pain levels are often left to the patient; he/she might choose to remain more lucid, albeit with discomfort, or to be more sedated and have more relief.
It should be clear by now that the patient and family are at the center of this choice, as they should be. All people should be given enough information to make the decisions that are in their own best interests. In fact, that was a primary reason for our founder, Florence Wald, to establish The Connecticut Hospice as the country’s first hospice. She believed passionately that patients and their families needed to be considered as a unit, and that they should be given their diagnoses and prognoses, which wasn’t commonly done fifty years ago. She trusted in the innate wisdom of those at the end of their lives to decide how to spend their remaining days, months, or years, and in the ability of nurses and other medical professionals to help those wishes to come true. And that is as true today at The Connecticut Hospice as it was at our inception.
Having seen tens of thousands of patients over the past five decades, The Connecticut Hospice has the highest amount of professional skills for end-of-life care management. Over time, The Connecticut Hospice has progressed from its original beginnings—providing care for cancer patients and their families—into serving all patients, regardless of diagnosis. One of the conditions which has seen a huge increase in incidence is dementia, in part because other diseases can be cured or controlled, leaving more people to suffer from mental decline at the end of life. This can be particularly hard on families, who are often grieving the loss of the person they knew, while that loved one is still alive. Our new program, Magnolia Care, will increase the services and support to patients and families with Alzheimer’s disease, and other cognitive failures.
The training that we are giving to our nurses, aides, and social workers, combined with our longstanding knowledge of treatment options that preserve quality of life, has allowed us to design Magnolia Care in the most thoughtful of ways. In order to best understand what we are offering, it will help to provide some explanation of the progression of dementia.
Between 5 and 8% of the U.S. population over 65 is living with some form of dementia, with that number rising to 50% of those over 85. Dementia is defined as cognitive changes that affect thinking, personality, and behavior. It can be difficult to diagnose in its earlier stages and can be confused with other causes of those same symptoms. However, it occurs broadly across these age groups and is expected to increase as life expectancy rises and more people enter this demographic.
Early phases of the disease can often be managed by families without outside support. Minor adjustments in daily living arrangements, or additive monitoring of complex tasks, can suffice for some period of time. Independent living may be a challenge but is sometimes prolonged with enough support from relatives or paid caregivers.
The final stage of most diseases of dementia occurs between 3 and 6 years after a diagnosis is made. The progression of the disease does not follow a specific timeline and is different in each case.
This period of advanced symptoms may be months or years in length and could include a variable course of events which is unpredictable. Regardless of the type of dementia, there are some typical features that are often common at this time:
Magnolia Care is designed specifically for persons living with dementia at the end of life. Nurses, social workers, chaplains, nurse aides, art and music therapists, and volunteers all undergo intensive training and are certified in person-centered dementia care and non-pharmacological interventions.
Our final-stage dementia care training was created by a hospice nurse with extensive experience caring for patients with dementia. This dementia-expert-lead training focuses on the behaviors and needs of hospice patients with cognitive failure, ensuring that Connecticut Hospice caregivers can recognize and respond to the concerns of dementia patients and families.
Like all of our Hospice Care programs, Magnolia Care provides a comprehensive approach that incorporates all the members of the hospice team in a plan of care that addresses the unique needs of each patient.
We have assembled a “tool kit” for use in homes, nursing homes, or assisted living, which offers enhanced tools for the management of symptoms, and can allow patients to access deeper memories, providing both solace and joy. The goals are to reach those patients where they are in their journey, help families to communicate and comfort their loved ones, and reduce the need for pharmacological solutions to common problems with behaviors.
Music is a known soother of dementia symptoms, and we work with caregivers to provide appropriate and significant music, tailored to the individual’s taste and age. MP3 players are embedded with this music in teddy bears, comfortably used by even people who are cognitively impaired.
The toolkits also include a diverse range of items to help dementia patients and their caregivers, including:
These dementia care toolkits can be used by relatives, other caregivers, or those on the staff of busy skilled nursing facilities. These resources are packaged in a container made to fit by a bed or chair and is easily stored.
Finding a way to help those around the patient interact naturally and normally is critical in allowing the patient to retain function and, most importantly, dignity. Our staff’s training enhances skills required to meet the pressing physical and emotional needs of hospice dementia patients.
There is much more that can be written or read about cognitive decline at the end of life, but our goal here is merely to introduce some new concepts in dementia care, and to urge you to contact us if you or someone you love might benefit from Magnolia Care. It’s all part of what makes The Connecticut Hospice such a vital resource to both those we serve, and to the field as a whole.
As we close in on our fiftieth anniversary, we are trying, more than ever, to educate, serve, and advocate for those suffering from life-limiting illness. This is our latest milestone. We at The Connecticut Hospice are here to help.
In many parts of the country, people think of hospice care as home care, where nurses come into private homes and help caregivers take care of end of life patients. In our area, Connecticut Hospice’s large inpatient facility brings GIP (general inpatient) to families as well. But hospice care is not just provided in hospices, or in homes. It can be delivered in any setting where a patient lives.
When someone moves to a skilled nursing facility(SNF) or assisted living, that becomes the patient’s home, and home hospice can assist there. For nursing homes, especially, this can be a great boon for families. Especially during the pandemic, much has been written about staffing shortages at SNFs. Hospice nurses and aides can supplement the care given by a skilled nursing facility.
For example, eating can become an issue for people with certain conditions. Sometimes, carefully feeding by trained professionals can increase their caloric intake significantly. Very few places would have the ability to feed many patients that way, but home hospice care can bridge the gap. Often, aide service is requested during mealtimes, and supplements the resources available for meal assistance.
Personal care is another function of daily living that can become problematic, especially with dementia. Patients can become resistant to bathing, or may need time-consuming help with dental maintenance. Again, home hospice aides may be used to add extra resources for those aspects of ongoing support.
At Connecticut Hospice, we have trained all of our home care staff in special techniques to improve the quality of life for patients with dementia. There are methods for feeding, bathing, and other activities that will improve the outcomes for those who can receive such personal attention.
If a patient is accepted as appropriate for home hospice care, he or she becomes eligible for Medicare Hospice Benefits (MHB). Those benefits are specified by Medicare, which pays for most of the hospice care delivered across the country. There are certain parameters for entry into that service, and someone must be referred by a physician. At that point, he or she would be evaluated by a hospice service, and, if appropriate, can then be admitted for MHB.
This can take place in any setting. A patient residing in a skilled nursing facility would be visited there by a hospice representative, and then enrolled in that setting.
Or, a patient can be released from an inpatient hospital or hospice setting, and sent home or to a SNF or Assisted Living Facility (ALF) with home hospice care. Evaluation can take place before the patient is discharged, so that all necessary equipment and medications can be delivered before the patient gets to the next setting.
Home hospice care covers the cost of those medications, as well as the equipment needed. Routine home care does not provide that level of assistance. Sometimes, patients and families resist the use of hospice care, just because of the word “hospice”. Before declining such help, people should understand that Medicare Hospice Benefits are a component of Medicare, and that the financial implications can be great, depending upon the level of care authorized for a recipient.
Accepting hospice home care does not put a time limit on someone’s life, but it does mean that the normal trajectory of an illness would indicate an expected lifespan of less than six months, in the opinion of a referring physician. It also means that they are no longer seeking curative treatment for an illness. We call this “comfort care”, as opposed to active methods of fighting the disease. There is a great range of outcomes with this type of care, but many people live longer. If you need help deciding about when’s the right time for hospice care, we have a list of ready signals that you can discuss with your physician.
Since curative treatment can be debilitating, hospital stays generally take a toll on the patient. Careful management of symptoms, especially pain, is a hallmark of hospice care, and one that can lead to a better quality of life. That in and of itself can prolong a person’s “good” time, and improve his or her outlook. It does not, therefore, necessarily indicate defeat, or failure, to choose hospice care. There are many good reasons to consider comfort care in a safe and supportive setting.
Understanding the finances behind Medicare Hospice Benefits is also key to peace of mind. In a nursing home setting, the family either pays for room and board, or is covered by insurance or Medicaid, depending upon the level of assets a patient has. The extra care provided by a hospice is paid for by Medicare, directly to the hospice.
Even in assisted living, where usually an upfront cost has been paid by a patient, in order to cover whatever services are necessary, hospice care is covered by Medicare, if the person is referred and deemed appropriate. The rules about visitation and distribution of medications can be different, but the concept is the same. Again, the hospice is paid directly by the Center for Medicare Services, as it would be in a private home.
It’s worth a word at this point about virtual hospice in a hospital. If a family member is too ill to transfer to home or even an inpatient hospice setting, end of life services can be provided in a traditional hospice environment. In those cases, the referring hospital would call in a hospice, and it would admit the patient and provide services in the hospital bed.
The hospice pays room and board in those cases to the hospital, but the patient and his or her family is not involved in that process, nor is the family responsible for paying for the extra services of hospice personnel. Not all hospitals have such an arrangement with individual hospices, but it is worth asking to see whether that is an option in any particular case.
For those patients on private insurance, they are also generally available, and the hospice can check for authorization. Also important to remember is that those services can be additive, so that they supplement whatever care is being given already, and provide additional comfort and aid to caregivers.
One of the goals of comfort care is to ensure that patients receive adequate pain relief and symptom support. This alone can lengthen and/or improve life. Another consideration is the reduction of hospital time—if hospice care prevents additional hospitalizations, or reduces the length of stay, it’s understandable why Medicare would pay for it. Caregivers are taught to call hospice before dialing 911, because sometimes episodes can be managed without a trip to the emergency room.
There are resources available to assist patients and families along the journey of an illness, and they are both easily accessible and affordable. As the country’s first hospice, we know well the need for our services, and hope to help others access them whenever appropriate.
Learn more about hospice care, and its many settings.
What makes Connecticut Hospice the right choice for hospice and palliative care? A staff that is guided by core values of C.A.R.E. to ensure the best in patient and family care. While a lot has changed since the start of Hospice in 1974, the quality of care provided has remained the same. In a recent new hire orientation, CEO, Barbara Pearce, stressed the importance of sharing not only the history and mission of The Connecticut Hospice to all new employees, but it is equally important to instill the guiding principles that all staff must follow to continue delivering the utmost quality of care: Compassion, Accountability, Respect, and Excellence (C.A.R.E.).
Beyond a shadow of doubt, the work that is done by each member of the Connecticut Hospice team matters and is valued by the organization as well as those impacted. Though quite frequently, when speaking with a Connecticut Hospice employee or volunteer, they will tell you that the work they do makes just as big an impact on their lives as those they care for.
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.
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