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Connecticut Hospice announces Magnolia Care, a new program for hospice patients with dementia.

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.  

Zoom in close of clasped hands of patient and care giver

Our Goals for Connecticut Hospice Magnolia Care

  • Utilize “best practices” to care for a person living with dementia
  • Assist caregivers with managing behaviors related to dementia
  • Help family members learn and participate in care in a meaningful way
  • Provide interventions that have evidence-based results

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.

Woman helping patient do art

Dementia Progression

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.

Understanding the Final Stages of Dementia

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:

  • Worsening of symptoms of profound memory loss often resulting in an inability to recognize family members
  • Limited speech
  • Total functional dependence
  • Urinary and bowel incontinence
  • Inability to ambulate
  • Frequently occurring infections, such as, urinary tract and pneumonia
  • Difficulty eating occurs with 90% of all persons living with dementia
  • Weight loss greater than 10% of total body weight
  • Increased time sleeping

Connecticut Hospice End of Life Dementia Care Training

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.  

Dementia certification training

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.

Dementia Care Tool Kit

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 Therapy

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.  

Comfort, Amusement and Practical and Items

The toolkits also include a diverse range of items to help dementia patients and their caregivers, including:

  • Comfort items to soothe restlessness and agitation such as a weighted blanket, stuffed animals, etc.
  • Items offering amusement, distraction, or help to focus attention. 
  • Tools to help make meals easier for patients

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. 

Connecticut hospice patient is visited by guitarist at bedside

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.

a word cloud of Hospice and all its parts

Hospice care can be delivered in any setting where a patient lives.

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.

Hospice care professionals can supplement the care at skilled nursing facilities.

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.

Hospice care professionals offer meal assistance.

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.

care giver feeding elderly woman

Hospice care professionals supplement personal care.

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.

elderly woman getting a  haircut
care giver helping elderly patient get dressed

Connecticut Hospice Professionals receive special training for patients with dementia.

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.

nurse and female patient working on puzzle

How does this help get paid for?  

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.  

Nurse and female patient joining hands

Medicare Hospice Benefits pays for many costs not covered in routine home care.

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.  

Many patients live longer receiving hospice care than curative treatment.

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.

Hospice comfort care can offer patients a better quality of life.

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.

femail patient in hospital bed outside on deck looking at boats on water

Extra care provided by a hospice is paid for by Medicare.

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.

Many hospitals call in a hospice to provide Madicare-covered care at the patient’s hospital bed.

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.  

women in hospital bed with doc on cell

Hospice services can be accessed in a variety of settings, and for those on Medicare, they are available from the government.  

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.  

Hospice comfort care reduces hospitalizations.

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.

Connecticut Hospice Volunteers during COVID

Why does Medicare Require Volunteers in a Hospice Program?

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.

1.) Hospice volunteers provide supporting services.

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.

2.) Volunteers offer specialized skills outside the scope of professional staff expertise.

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. 

Pearce Real Estate volunteers at Connecticut Hospice
volunteer Nancy Mooney gardening at Connecticut Hospice

3.) Volunteers can focus on specific needs.

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. 

Connecticut Hospice volunteer pushes patient in wheelchair so she can enjoy the water views outdoors

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!

Pet therapy dog greets hospice family member
Pet Therapy volunteer brings Golden Retriever to visit a patients bedside

4.) Volunteers offer the gift of time and company.

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.  

5.) Volunteers free up time for professional staff.

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.

Hospice volunteer works at the checkin desk

6.) Hospice volunteers offer a safe outlet for patients and family members to unburden themselves.

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.

Why do people volunteer for hospice work?

What do the volunteers get in return?  Most say immediately that they receive more than they give.  

Painted "Kindness Rocks" a hospice arts project

Arts volunteers bring their talents in a particular way.  

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.

music volunteers sing and play guitar on St. Patrick's Day
musician volunteer plays the guitar

Pastoral care volunteers are another special group.  

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.

Students find volunteering to be the transformative part of their education.

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. 

College student shadows Hospice staff member
University of South CarolinaStudent learning at Connecticut Hospice

The requirements for hospice volunteering are surprisingly robust.  

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.  

Hospice volunteers passion for the mission buoy all in the hospice setting.

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. 

Hospice volunteers find their work to be joyous, gratifying, and rewarding.

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.

The Hospice Plan of Care is Delivered By a Medically Directed, Nurse-coordinated, Interdisciplinary Team

Interdisciplinary Team Graphic with icons representing the different disciplines

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. 

Patient’s Bill of Rights is at the Center of the Hospice Plan of Care

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. 

The Hospice Plan of Care is Highly Customized for Each Patient

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. 

Patient and Family Centered Care

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 Management

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. 

hospice patient in hospital bed grimacing in pain
patients doing rehab with walker and cane

Flexible Care When and Where it’s Needed

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

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.

Holistic Approach to Emotional, Social, and Spiritual Support 

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.

Individualized Options

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.

The Patient and Family Drive Plan Of Care Decisions

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.

Dr. Joseph Sacco at bedside of hospice patient

A Comprehensive Breakdown of the Clinical Signs for When Hospice Care is Appropriate

Hospice Care: Making the Decision

holding and elderly hand

What is Hospice Care?

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 Health Insurance Card

What Does the Hospice Benefit Cover?

Medicare Hospice Benefit Eligibility

  1. Medicare Part A
  2. Physician certified six months or less prognosis if the terminal illness runs its natural course
  3. The individual is willing to forgo curative therapy for the terminal illness, elect the hospice benefit, and waive all rights to Medicare payments for the terminal illness and related conditions

Centers for Medicare and Medicaid Services, 2021

Hospice Documentation of Decline

A computer keyboard with a stethoscope draped over it.

Patients are considered to have a life expectancy of six months or less if there is documented decline in clinical status.

  • Presumes assessments are done over time
  • Baseline and follow up data must be reported
  • Other clinical variables that may support this prognosis should also be included

End-of-Life Physical Signs 

  • Frequent or recurring infections
  • Rapid decline in health despite aggressive medical treatment
  • Frequent hospitalizations or emergency room visits
  • Uncontrolled pain, nausea, or vomiting
  • Increase in the amount of time sleeping
  • Loss of urinary or bowel control
  • Chest congestion and/or rapid breathing
  • Decrease in food and fluid intake; weight loss
  • Changes in body temperature (fever or feeling cool to the touch)
  • Restlessness or repetitive motions
  • Decreasing ability to perform daily tasks without assistance

End-of-Life Mental And Emotional Signs

  • Withdrawal from family, friends, and loved ones
  • Making statements or requests that seem out of character • Giving away personal belongings
  • Making funeral plans
  • Experiencing visions or hallucinations
  • Making apologies or saying goodbye
  • Expressing a desire to no longer seek medical interventions, hospitalizations, treatment

Painting the Picture of the Decline of a Terminal Patient

measuring tape

Weight Loss:

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.

Loss of Appetite:

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.

Nurse Hold walker for hospice patient getting out of bed

Decline in Functional Status:

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.

Hospice Patient Sleeping with wife at his bedside

Sleeping:

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

A Clinical Break Down of End-of-Life Signs

Patient is Unresponsive to Therapies:

  • Pain requiring increasing doses of analgesics
  • Persistent nausea despite multiple drug (Compazine, Phenergan, Zofran, Reglan)or non-pharmacological interventions (diet, aromatherapy)
  • Dyspnea and persistent cough with increasing respiratory rate
  • Diarrhea

Progressive Weight Loss:

  • Weight loss of at least 10% of body weight in the previous 6 months (not related to reversible causes; diuretic, depression)
  • Decreasing anthropogenic measures (mid-arm circumference, abdominal girth)
  • Observation of ill-fitting clothes, decreased skin turgor, increasing skin folds
  • Other observation to demonstrate loss of weight in a patient that can not be weighed on a scale

Dysphagia

  • Coughing or choking when eating or drinking, persistent drooling of saliva, pocketing of food; being unable to chew food properly, a gurgly, wet-sounding voice when eating or drinking.
  • Leading to recurrent aspiration and/or inadequate oral intake ØDocumented decrease in food portion consumption
  • Documented decrease in food portion consumption 

Decline in Clinical Status

  • Decline in systolic BP to < 90 or progressive postural hypotension
  • Ascites
  • Venous, arterial, lymphatic obstruction due to metastatic disease
  • Edema
  • Pleural or Pericardial effusion 
  • Weakness
  • Change in level of consciousness

Laboratory Values

  • Increasing or Decreasing pCO2
  • Decreasing SaO2
  • Increasing calcium, creatinine, or liver function test ØIncreasing tumor markers
  • Progressively decreasing or increasing serum potassium or sodium

Decline in Clinical Status Guidelines

  • Decrease in Karnofsky and Palliative performance Score due to disease progression
  • Progressive decline in Functional Assessment Staging Test (FAST) for dementia to 7A or greater
  • Progression to dependence on assistance with ADLs
  • Progressive stage 3-4 pressure ulcers despite optima care
  • Increasing ER visits, hospitalizations, or physician visits related to the terminal illness before election of the hospice benefit.

Non-Disease Specific Baseline Guidelines

(HIV Disease, Stroke, and Coma require a lower score to qualify)

Dependence on assistance for two or more of the following ADLS

  • Ambulation 
  • Continence 
  • Transfer 
  • Dressing 
  • Feeding 
  • Bathing

Comorbidities

  • Chronic Obstructive Pulmonary Disease (COPD)
  • Congestive Heart Failure (CHF)
  • Ischemic Heart Disease
  • Diabetes Mellitus (DM)
  • Neurologic Disease (Parkinson, ALS, MS, CVA)
  • Renal Failure
  • Liver disease
  • Neoplasia
  • AIDS/HIV
  • Dementia
  • Refractory Autoimmune disease (Lupus or Rheumatoid Arthritis)

Palliative Performance Score (PPS) below 70%*

Palliative Performance Scale PPS
% 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

Karnofsy Performance Status (KPS) below 70%*

Karnofsky Performance Status Scale Definitions Rating % Criteria
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

Download our Free PDF of Hospice Ready Signs

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Do you have a loved one that is ready for Hospice Care?


What Connecticut Hospice Workers Say about Working at Hospice

One of the comments we often get from people we meet in the community is that it must be “so depressing” to work in a hospice.  They are always surprised that those of us who do work in one don’t find it to be that way.  In taking an informal sample of employees at The Connecticut Hospice recently, there is quite a bit of uniformity on this topic.

Symbol of Hope sculpture at Connecticut Hospice with rainbow over Long Island Sound in background
Symbol of Hope sculpture at Connecticut Hospice with rainbow over Long Island Sound in background.

Hospice Care is a Meaningful Calling

It matters to all workers everywhere to find meaning in their work.  Hospice work intrinsically falls into the category of meaningful employment.  It isn’t just a job.  It’s a calling, even for those who have non-clinical positions. They feel that what they do matters, and that they would find a for-profit, non-healthcare situation inherently different. A sense of mission is palpable in the air.

Connecticut Hospice Home Care staff hold outdoor meeting by coffee truck
Entire Home Care staff (Nursing, C.N.A.s, Social Work and Clinical Support) recently held a morning meeting.
Connecticut Hospice Workers During COVID 19
When the pandemic first hit all ConnecticutHospice staff, regardless of job title, wore scrubs to demonstrate it was a team effort fighting the war on COVID.
Connecticut Hospice in-patient nurses celebrate the successful admission of the first COVID-positive patient.
Connecticut Hospice in-patient nurses celebrate the successful admission of the first COVID-positive patient.

Proximity Drives Connection with Hospice Patients and Families

The work is all around us.  Most employees who aren’t clinical work within one floor of the inpatient unit.  They share elevators and stairs with visitors and families.  They handle paperwork for patients currently housed in our facility. That proximity works in precisely the opposite way that the average bystander might expect.

Connecticut Hospice staff celebrate the release of the facilitys first COVID positive patient
Connecticut Hospice staff celebrate the release of the facility's first COVID positive patient.
Connecticut Hospice staff members orchestra and attend an impromptu wedding, outside.
Connecticut Hospice staff members orchestra and attend an impromptu wedding, outside.

Hospice Work Offers Perspective and Gratitude in Daily Life

Hospice employees leave every day with gratitude for interaction with loved ones, exposure to nature and the outside world, and the gift of time.  They realize that our days are short, and health is uncertain.  That makes them desire to live life to the fullest, and to savor small pleasures. 

It also puts troubles and negativity into perspective.  When having a tough day, a visit to the inpatient floor is a reminder of our good fortune, and brings feelings of gratitude.  Especially during the pandemic, we can take solace, no matter what our problems, in being able to make someone else’s final days better and more rewarding. That also serves as a reality check on everything else in our lives.

A Connecticut Hospice family says good-bye to their dad:grandfather singing “Country Roads,” through the glass
A Connecticut Hospice family says good-bye to their dad:grandfather singing “Country Roads,” through the glass.
A home care patient celebrates her birthday with the help of her Connecticut Hospice team.
A home care patient celebrates her birthday with the help of her Connecticut Hospice team.

Many Hospice Staff experience Hospice Care as Family Members

Many of our employees have had relatives pass away in our hospice care.  Seeing what we do first hand is a formative experience for them.  It also enhances the sense of family that exists among the staff. We are there for the patients and families, and we are there for each other.  We pull together in times of need, and work as a team, to help everyone we touch to experience this level of care.

Employees can better support their friends and relatives through loss, as they’ve learned to accept the pain, listen, and just be present for others. As one said, “End of life care shouldn’t be taken for granted”.  They feel strongly about closure, and find the moments precious, even when the days are short.  

Connecticut Hospice nurse with her mom as a hospice patient
Connecticut Hospice nurse visits with her mom who is a hospice patient.
Connecticut Hospice Volunteer Taking a patient on a stroll Outside
Connecticut Hospice Volunteer takes a patient on an outdoor stroll to enjoy the water views of Long Island Sound.

There can be Joy and Celebration Even in the Final Days

Maybe surprisingly, we find a lot of joy in celebrating those moments, whether by pulling together a surprise party (or even a wedding!), bringing in a cherished pet, or wheeling a patient’s bed outdoors for some spring sunshine.  The building is filled with music and art, as well as more laughter than one might think.  Memories are made, or relived.  Holidays are special, as they are often the last ones a patient might enjoy.  Every day matters.

Connecticut Hospice Patient has a surprise princess birthday party
Connecticut Hospice Patient has a surprise princess birthday party!
Bea the Border Collie Therapy dog sharing some love with Hospice Family Member
Bea, the Border Collie therapy dog sharing some love with Hospice Family Member.

Hospice Care is Gratifying Work

The saying that we get more out of hospice than we put in may be trite, but, for so many of us, that rings so true. Whether we spend our working hours billing, cooking, filing, or fundraising, we take meaning from our surroundings, and pride in what we do.  What more could you ask from your work?

Interested in Becoming a Hospice Volunteer?

As a volunteer for Connecticut Hospice, you can choose the best role and time that works for you, from weekdays or weekends, to mornings or evenings. 

Opportunities to make a difference as a volunteer continually arise.

Interested in Hospice Career Opportunities?

Those who come to Connecticut Hospice join a community and have the opportunity to pursue a challenging and rewarding career in the healthcare field.

We offer opportunities for growth that include a range of clinical and administrative positions.

Please Support Us

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.

Donate  Online

Contact Admissions

Admissions may be scheduled seven days a week.
Call our Centralized Intake Department: (203) 315-7540.

Admissions
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