Please view our updated COVID-19 guidelines and visiting procedures →.
“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.
Volunteers are at the heart of any hospice program. In fact, the Medicare Conditions of Participation for hospice care require that five percent of all care be given by volunteers. Why would such a regulation exist? There are many reasons.
Hospice programs are designed to treat the entire family, from the time of admission through a year after the patient’s death. No one person can fulfill all of the needs of every family member, but the presence of an active volunteer program makes it much more likely that patients and families can have their pressing needs met. Volunteers are an extension of the staff, and make it possible for a hospice to do more for everyone.
Volunteers bring talents that might not be possessed by anyone on the paid staff. Whether it be hairdressing, reiki, massage therapy, gardening, or knitting, those who come to volunteer have a variety of competencies, many of which may be apart from any professional skills. It’s not uncommon to find a retired CEO that can fix things, a teacher who does massage therapy, or a former librarian who can get office work done.
Volunteers don’t have to do the everyday tasks, so they can go above and beyond for patients and visitors. One of the most popular assignments is something called a “loving whisperer”—a person who sits by a dying patient, who has no relative present, holding a hand or giving comfort in other ways. People who like to drive, and who might bring a family member who doesn’t have a car to visit, or pick up a prescription and deliver it to a homebound patient, are like gold to a stretched paid staff.
Therapy pet owners are mobbed as soon as they come off the elevator. Everyone, including the professionals working at the hospice, are happy to pet a dog with a wagging tail. The cheer they bring is hard to duplicate with humans!
Time is often a precious gift in and of itself. Volunteers may roll beds outside on a sunny day, or even just sit and listen to stories, confessions, memories, or fears. They learn to just “be”, in a rushed world where everyone has a job to do. At the end of life, the days may be short, but the minutes and hours can be long. How much better it can be to talk to a willing listener, than to watch daytime TV! These helpers are often around at times with fewer visitors, and many have the patience to simply sit in silence, or to be a cheerful face when a patient wakes up from a nap.
Many volunteers also willingly do daily tasks that free others up. One such duty is checking visitors in at the front desk. Those cheerful souls calm and comfort anxious guests, making a huge difference just with a few kind remarks. One such volunteer noted that men, in particular, are often uncomfortable in such medical surroundings, and are gratified to be greeted and recognized as grieving relatives. Sometimes they find it easier to unburden to a stranger, and volunteers are practiced at letting them do just that.
The same holds true at the bedside, where deep feelings may be expressed. One volunteer spoke of listening to a woman over the course of her stay, vocalizing gratitude for her husband coming faithfully each day for lunch. After she passed away, the volunteer was able to communicate that gratitude to the husband, who had never heard it directly from his wife. Stories like that are not unusual, and mean so much to those left behind.
What do the volunteers get in return? Most say immediately that they receive more than they give.
Many musicians have a day job doing something completely different, so they enjoy getting the chance to play for an audience. Families can connect within their own group, or even with other families, through music. Patients may be soothed, or even energized, as is the case with some suffering from dementia, by favorite songs. One man who hadn’t spoken in days, but who had been a competitive ballroom dancer, opened his eyes after his wife requested a specific number from those days, and asked “shall we dance?”. Moments like that keep volunteers coming back over and over.
Many are laypeople, but with an interest in spirituality of all kinds, and a desire to offer that to those requesting it. Even those without formal religious views can find solace in discussing some of life’s biggest questions with these dedicated helpers. In the vein of the old saying that the best way to learn something is to teach it, they feel enriched by experiencing the faith, and doubts, of others.
Many students, whether training for medical careers, doing community service, or just giving some extra time, find that they are amazed by everything that they learn while volunteering. Some say it was the most transformative part of their education. Others are moved to search for a career in hospice or a related field. Students who do technological projects may not be taking care of patients, but they are certainly exposed to the philosophy of palliative and hospice care. For those who are in medical, nursing, or paraprofessional schools, it may be very different than what they are taught in settings where curative care is the guiding principle.
Not only medical clearance, but fingerprinting (if working with patients), interviewing, and training are all mandated. Most hospices also ask that applicants wait a year after a personal loss to become a volunteer. Rather than considering that list to be a high hurdle, it should be seen as a compliment, to show that volunteers are just as important as employees, and should be vetted that way.
It’s easy now to see why volunteers are so critical to a hospice. Indeed, their passion for the mission is inspirational not only to patients and families, but to the paid staff as well. The staff not only acquire extra hands and minds to aid in their work, but are buoyed by the caring and support of those who show up faithfully to help, week after week. Some come daily, some weekly, and some seasonally, but all bring the reminder of the meaning of hospice care.
They all are clear on one thing: Hospice work for them is anything but depressing. They speak of it as “joyous”, gratifying, and rewarding. All value the human connections they find in those settings. In doing their important work, they find meaning. And they are grateful—for health, for life, and for every day. What more could a volunteer, or indeed anyone, ask?
The Hospice Plan of Care (POC) maps out the needs and services supplied to hospice patients and their caregivers.
If one wanted to probe the essence of the hospice philosophy, it would probably come down to the hospice plan of care, developed for each patient on admission, and revisited every two weeks after that, by the interdisciplinary team managing that individual patient. This plan is mandated under Medicare for hospice reimbursement and has very specific requirements that all hospices must follow. It isn’t just that various disciplines are included in the plan, but that all the practitioners convene to contribute to it. The Connecticut Hospice is very familiar with all these components, since our Founder, Florence Wald, wrote extensively about the various aspects needed for proper patient treatment, as she worked to bring the first hospice care to America almost fifty years ago.
At the heart of what Florence Wald believed was the notion that patients have rights, and should be treated as partners in the care that they receive. She thought, and it was novel at that time, that they should be told their diagnoses and prognoses, and that the whole family should be involved in planning and care of the illness. It seems hard to imagine now, but cancer patients were often not told what their disease was, nor were they advised if it was terminal. This was seen as a kindness, but Ms. Wald felt that it impeded a patient’s ability to achieve closure, and to plan for his or her last days, weeks, or months of life. Today this appears obvious, but, at the time, it led to the idea that there should be an informed discussion about options, treatment, and a patient’s wishes.
This Hospice Plan of Care goes far beyond the concept of advanced directives that many people are familiar with from medical practice currently. It is a plan for comprehensive care that includes preferences about pain medication, sedition, home vs. hospital vs. hospice as a location of care, treatment choices, comfort measures desired, and family involvement. It also includes the more expected areas of funeral arrangements and religious practices, as well as financial considerations.
To many patients and families, the end of life can come as a surprise, no matter how often they may have spoken of the possibility. Too often, they can feel as though they have boarded a train that is proceeding quickly, and without their full informed consent in some instances, toward a destination, they may not feel that they have accepted. There can also be a sense that everything is preordained—that the medical profession will be deciding the next steps, based on superior knowledge. This usually leads to further treatment, either because paths forward presented as possibilities are not understood to be optional, curative, or even recommended, or because someone in the group is choosing extended life as the goal for action, no matter the chances or consequences. Without deliberative planning, this runaway train can end up in a place no one consciously intended to go.
How does a hospice plan of care prevent this runaway train of futile, expensive, and often painful curative attempts? First of all, the care plan is patient and family-centered. The aim is to make sure that the patient’s goals of care and treatment wishes are honored. Palliative care is very different from curative treatment, and both are explained. Comfort Measures Only (CMO) is a totally valid decision to make, and can, not infrequently, even lead to a longer life span. Treatment can be enervating, and frequent trips to the ER or lengthy hospital stays can weaken patients further, and lead to other issues.
Pain is another important topic. Not everyone has the same pain tolerance. Even if they did, some will choose to be more sedated than others, depending upon their own wishes for family visits, final projects, or other reasons. This is crucial to decide with the patient, if possible, since family members, or even the medical team, can be upset by signs of suffering, and want to have them alleviated.
Independence and residence are critical to discuss. For some, living at home is vitally important. Others may be afraid to be alone, or feel more comfortable with attendants around, either in the home, or in a skilled nursing facility. Some wish to undergo rehabilitation, to acquire the strength or ability to perform certain skills. Different options can also be right at different points.
When the end of life approaches, there can again be different preferences. Inpatient hospice care is often chosen by those who don’t wish to burden their relatives with personal care, or perhaps feel that their surviving family will be unhappy to have had them die at home. Some caretaker relatives may be increasingly unable to provide the level of support needed as the disease progresses. In other situations, the patient’s strongest wish may be to die at home. When this is true, all parties need to examine all the requirements necessary to achieve that result. For those who have spent a great deal of time in a particular hospital unit, they may wish to remain in a bed there.
Treating unrelated conditions is another consideration. Sometimes, antibiotics are used, even in CMO cases, to make the patient more comfortable. Others may wish to continue medications they have previously been taking. Many find letting go of all restrictions, dietary or otherwise, is a welcome relief. For them, the team dietician may be less important, but some families struggle to keep patient appetites up, and find that consultation valuable.
Social work, arts therapy, and spiritual care members of the Interdisciplinary Team are involved as well, not only for the typical end-of-life financial or funeral planning, but for help with bereavement and grief. The patient will rest more easily if resources are provided to work on those issues. The patient him- or herself may have spiritual questions or concerns. He or she may simply want to talk to a neutral listener, without fear of hurting feelings or causing pain. Working with an arts therapist, either in home care or in the inpatient unit, can be a way of creating new memories, or accessing old ones. Children especially tend to gravitate toward expressing their feelings through art and music. Assessments in these areas are done at the start of care, and reviewed, with action plans updated, on a regular basis.
How does all of this differ from what a patient and/or the family might accomplish alone? It isn’t always different. Some families are familiar with final illnesses, or extended personal care. Some have talked about what end-of-life wishes are, and all agree on one plan from the outset. If an illness has been lengthy, often especially in cases of dementia, decisions have already been made at various points. For others, however, this plan of care is a helpful introduction to all of the issues involved. For them, the caregiving team is very important in allowing them to accept, cope with, and come to terms with the process. Because there are many disciplines represented on the team, it can happen that different parts of the family relate to different styles or outlooks, and everyone can find relief in some regard.
Dr. Joseph Sacco, the Chief Medical Officer at The Connecticut Hospice, is certified in palliative care medicine, which he has been practicing for many years. He finds patient choice to be a true priority in good hospice care. As he explains, “What is left is choice — the right of patients and families to decide what their doctor should do, based on facts delivered clearly and with compassion.” That quote captures so well the philosophy of hospice: that it is the patient and family who are at the center of the constellation and driving the plan of care, and not the medical team. It is important for all parties to recognize that, even when it seems that there are no choices left, there are choices.
The decision as to how the end of life should unfold is a gift that all hospices can provide to their patients and families, and one that should never be taken for granted. It goes all the way back to the beginnings of hospice care, first in London, and then in Connecticut. The aim is to provide comfort and compassion, and allow all the dignity of fulfilling whatever wishes they can, to the best of their—and our—abilities.
A Comprehensive Breakdown of the Clinical Signs for When Hospice Care is Appropriate
Hospice care is a holistic approach to treatment that focuses on the patient and family which addresses the physical, mental, emotional, and spiritual needs of the patient and family.
At Connecticut Hospice, we understand that it is a highly personal decision to begin receiving hospice care and we value the choices and goals of each patient and family. We are here to help you make the decision of when it's time for hospice care.
Medicare Hospice Benefit Eligibility
Centers for Medicare and Medicaid Services, 2021
The patient is unable to be weighed on scales due to bed-bound status. MAC is 18cm to the right upper arm. During the interview with the daughter, who has been caring for the patient over the past year, she said that her mother has lost weight in the past 3 months but unable to state how much. The daughter states that she has been wearing clothing in a size 16 women’s but now she had to get mother new clothing gradually over the past few months due to her clothing “falling off of her”. The patient is now able to wear size 10 women's clothing.
The patient has been eating 4-6 child-size meals per day but has only eaten about 25% of each meal. This consists of 2 slices of bacon, 3 bits of grits for breakfast. She had a 1/3 of an Ensure supplement, then for lunch, she had a few bites of homemade soup and a popsicle.
The patient requires assistance of one for bathing at the sink, dressing his lower body and now uses a walker for all ambulation inside and outside of his room. The patient was completely independent with all ADL’s and driving and working every day until 3 months ago when he was diagnosed.
The Nurses Aide describes the patient is sleeping 8-10 hours at night and then takes a 3-4 hour nap during the day. When the patient is up in the chair for more than an hour, she is frequently dosing off. This is a change from just 2 months ago when the patient was not even sleeping during the night and was having agitation in the evening and sleeping a few hours during the day only
(HIV Disease, Stroke, and Coma require a lower score to qualify)
| % | Ambulation | Activity Level Evidence of Disease | Self Care | Intake | Level of Consciousness | Est. Median Survival in Days (a) | Est. Median Survival in Days (b) | Est. Median Survival in Days (c) |
|---|---|---|---|---|---|---|---|---|
| 100 | Full | Normal No Disease | Full | Normal | Full | NA | NA | 108 |
| 90 | Full | Normal Some Disease | Full | Normal | Full | NA | NA | 108 |
| 80 | Full | Normal With Some Effort Some Disease | Full | Normal | Full | NA | NA | 108 |
| 70 | Reduced | Can't do Normal Job or Work Some Disease | Full | Normal or Reduced | Full | 145 | NA | 108 |
| 60 | Reduced | Can't do hobbies or housework Significant Disease | Occasional assistance needed | Normal or Reduced | Full or Confusion | 29 | 4 | 108 |
| 50 | Mainly sit/lie | Can't do any work Extensive Disease | Considerable assistance needed | Normal or Reduced | Full or Confusion | 30 | 11 | 41 |
| 40 | Mainly in bed | Can't do any work Extensive Disease | Mainly assistance needed | Normal or Reduced | Full or Drowsy or Confusion | 18 | 8 | 41 |
| 30 | Bed Bound | Can't do any work Extensive Disease | Total Care | Reduced | Full or Drowsy or Confusion | 8 | 5 | 41 |
| 20 | Bed Bound | Can't do any work Extensive Disease | Total Care | Minimal | Full or Drowsy or Confusion | 4 | 2 | 6 |
| 10 | Bed Bound | Can't do any work Extensive Disease | Total Care | Mouth Care Only | Drowsy or Coma | 1 | 1 | 6 |
| 0 | Death |
| 100 | Normal no complaints; no evidence of disease | |
| Able to carry on normal work; no special care needed | 90 | Able to carry on normal activity; minor signs or symptoms of disease |
|---|---|---|
| 80 | Normal activity with effort; some signs or symptoms of disease; | |
| 70 | Cares for self; unable to carry on normal activity or do active work. | |
| Unable to work; able to live at home and care for most personal needs; varying amount of sassistance needed. | 60 | Requires occasional assistance; but is abke to care for most personal needs. |
| 50 | Requires considerable assistance and frequent medical care. | |
| 40 | Disabled; requires special care an assistance. | |
| 30 | Severely disabled; hospital admission necessary; active supportive treatment necessary. | |
| Unable to care for self; requires equivalent of institutional or hospital care; disease may be progressing rapidly. | 20 | Very Sick; hospital admission necessary; active support treatment necessary. |
| 10 | Moribund; fatal processes progressing rapidly. | |
| 0 | Dead |
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.
