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The Connecticut Hospice Logo
Stand By Me Palliative Care Program Logo

Connecticut Hospice recently held a ribbon-cutting ceremony to celebrate the opening of its Palliative Care Clinic. This celebration occurred shortly after the official launch of its Palliative Care Program, Stand by Me. In addition to meeting with our clinicians at their newly launched waterfront clinic, services can also be provided at skilled nursing homes and long-term care facilities.

Outpatient Palliative Care Clinic Ribbon Cutting
Pictured: Mary Fitzgerald, Marketing, Barbara Pearce, CEO, Fiona Palmieri, Community Healthcare Worker, Zina Crescenzi, Staff APRN, Dr. Joseph Sacco, Chief Medical Officer, and John Tarutis, Director of Business Development

Stand by Me Palliative Care Program

The Stand by Me palliative care service is a physician and APRN consultative program for the treatment of discomfort, symptoms, and stress caused by a serious illness. Palliative care works with primary medical practitioners to attain treatment goals, prevent or ease suffering, and improve quality of life. It gives patients a chance to live better, have better physical functioning, and decrease depression and anxiety.

Doctor with female patient

What is Palliative Care?

The goal of Palliative Care is to improve the quality of life for patients being treated for serious illness. It is appropriate for all stages of treatment, starting at diagnosis. The focus is on relieving complex physical, psychological, social, and/or spiritual problems related to life-limiting or irreversible illness. It includes counseling on disease management to empower patients to better understand their illness and its treatment so they can choose the care best suited to their unique needs.

Palliative Care Symptom Management Includes:

Palliative Support You Can Depend On

Palliative care is available to you at anytime during the course of your illness. You can meet with a palliative specialist as little or more often as needed. Palliative care does not mean you are dying, it is about living better, healthier, and being as comfortable as possible. This all leads to a better quality of life and better engagement with loved ones. Very often, people under palliative care continue treatment of their disease and stabilize and graduate from the service. Palliative care is about living long and well!

Learn more about our Outpatient Palliative Care Services

Relief Without Delay

You should not have to endure unnecessary suffering from symptoms of disease or treatment. We respond promptly to calls for assistance, offering 24/7 support. We understand the urgency of your needs and can swiftly schedule in-person visits with our full-time Advanced Practice Registered Nurse, ensuring expert symptom management and counseling on disease management options within days, not months.

Call today to schedule an appointment: 203-315-7540

What's the difference between Palliative care and Hospice Care?

Click the links below to learn more about Palliative care vs. Hospice care.

Compassionate Care: Hospice vs. Palliative Care Insights

Palliative Care vs. Hospice Care—What You Need to Know

Mother of a Cancer Patient Authors a Guide to Palliative Care

transparent body highlighting the Respiratory system

Facing the end of life is a profound and emotional experience for both individuals and their loved ones. In these challenging moments, it's essential to comprehend the various aspects of the dying process, including some common breathing patterns that often emerge at end of life. This blog post aims to shed light on end-of-life breathing patterns, exploring their manifestations, mechanisms, and the compassionate approaches available for treatment.

As individuals approach the end of life, changes in breathing patterns are common and can be indicative of the body's transition towards death. These alterations are part of the natural dying process and often occur as a result of the body's decreasing energy levels and organ systems shutting down. It's crucial to recognize that each person's journey is unique, and breathing patterns may vary. For some, these common patterns may be present, and for others none of these will occur.

Breathing Patterns Before Death

  1. Normal Breathing Patterns: Before delving into the changes that occur at end of life, it's essential to understand the typical breathing patterns. Normal breathing is characterized by regular, rhythmic inhalations and exhalations. The rate of breathing can vary depending on factors such as age, physical activity, and overall health. In a relaxed state, adults usually breathe between 12 to 20 times per minute.
  2. Cheyne-Stokes Respiration: One common end-of-life breathing pattern is Cheyne-Stokes respiration, characterized by alternating periods of deep breathing followed by gradually shallower breaths and temporary pauses in breathing altogether. This pattern can be distressing for loved ones to witness but is generally painless for the individual experiencing it. It can also be described as a crescendo-decrescendo breathing pattern. Physiologically, it is suggested to be caused by a buildup of carbon dioxide in the blood which in turn causes the brain to direct the body to breathe quicker. Eventually the body is too weak to keep breathing rapidly and then slows down until it rests, this then causes carbon dioxide to build back up again thus restarting the process.
  3. Agonal or Irregular Breathing: Irregular breathing, marked by unpredictable pauses and variations in breath rate, is another common occurrence. It may seem erratic, with moments of rapid breaths followed by periods of slowed or irregular breathing. This pattern often indicates the body's diminishing ability to regulate breathing. Some providers may call this form of breathing mandibular breathing or guppy breathing as it appears like a fish out of water.
  4. Noisy Breathing: As the body weakens, congestion and the accumulation of fluids may lead to noisy breathing, commonly referred to as the "death rattle" or “terminal secretions.” Though unsettling for caregivers and families at the bedside, this pattern, like the others above, also typically doesn't cause discomfort for the individual. The noise is a result of air passing through secretions in the airways.

Compassionate Approaches to End-of-Life Treatment

Terminally ill woman with compress on forehead refusing from hospice porridge
  1. Maintaining a Calm Environment: Creating a calm and peaceful atmosphere is crucial for both the individual and their loved ones. Dimming lights, playing soft music, and surrounding the person with familiar items can contribute to a serene environment. Holding their hand, or having you place your hand on their chest can be comforting as well. 
  2. Positioning and Comfort Measures: Adjusting the individual's position to enhance comfort can be beneficial. Elevating the head slightly or turning the person on their side can aid in relieving respiratory distress. Placing pillows under pressure points helps prevent discomfort. If a patient is having noisy breathing is it crucial to turn the patient every so often to allow gravity to help drain some of the secretions.
  3. Hydration and Moisturization: Offering small sips of water or moistening the individual's lips with a damp cloth can help alleviate the sensation of dryness and contribute to their overall comfort. It's important to note that forcing fluids is not recommended in these situations as it make exacerbate breathing difficulties and secretion buildup. 
  4. Pharmacological Interventions: Healthcare professionals may recommend medications to manage symptoms such as anxiety, pain, or respiratory distress. These medications are carefully chosen to provide relief without hastening the dying process. Such common medication includes an opioid like morphine or dilaudid which helps ease the rate and labor of breathing to a calmer and more appropriate rate. Rest assured that research shows that use of opioids does not hasten the dying process in any way. Anticholinergic medications are also another class of medications that are sometimes helpful for noisy breathing and are used to help decrease the amount of secretions in the airway.  
  5. Oxygen Therapy: Supplemental oxygen may be provided to alleviate shortness of breath and improve oxygenation. However, it's essential to monitor oxygen levels carefully to avoid potential complications. In most cases using nasal cannula oxygen is enough to provide a comfortable flow of oxygen to the dying patient. If more oxygen is needed than non-Invasive ventilation techniques such as continuous positive airway pressure (CPAP) or bilevel positive airway pressure (BiPAP), or non-rebreather face masks may be used to support breathing and improve oxygenation. 
  6. Emotional and Spiritual Support: Providing emotional and spiritual support is crucial during end-of-life care. Encourage open communication, share memories, and express love. Even if the dying patient cannot communicate verbally, it is widely believed they can still hear and experience the comfort of loved ones. Spiritual leaders, counselors, or hospice professionals can offer guidance and comfort to both the individual and their family during this time.
Sad senior woman supporting her terminally ill husband lying in the hospital

Understanding end-of-life breathing patterns is a crucial aspect of providing compassionate care to those nearing the end of their journey. It's essential to approach these situations with empathy, patience, and a commitment to maintaining the dignity and comfort of the individual. By combining medical knowledge with emotional and spiritual support, we can ensure that the final moments of life are as peaceful and meaningful as possible for both the person and their loved ones as they take their final breathes. 

Agitated dementia patient with wife speaking to doctor

Understanding Dementia: Forms and Progression

Dementia has several different forms, including Alzheimer’s disease, Lewy Body dementia, vascular dementia, frontotemporal dementia, Parkinson’s Disease-related dementia, and Chronic Traumatic Encephalopathy. All forms of the disease with the exception of Chronic Traumatic Encephalopathy, are terminal and last an average of seven to ten years, robbing people of their cognitive abilities, personality, and ability to care for themselves. Ultimately, people with dementia become bedbound and unable to talk, lose their appetites, stop eating, and become unrecognizable, emaciated versions of their once robust selves – devoid of the unique qualities that make each of us special. 

Common Complications and Behavioral Symptoms of Dementia

Complications such as difficulty eating and aspiration – inhaling food and fluid – with consequent pneumonia, and urinary tract infections and bedsores are very common. Other, later consequences of dementia, not necessarily seen in all people with this disease, are restlessness, agitation, combativeness, and inappropriate sexual behavior. Some dementias, such as Lewy Body dementia, are accompanied by hallucinations and delusions, including paranoia.

Essential Care Strategies for Dementia Management

The management of dementia is time consuming, requiring dedication and patience as afflicted individuals become increasingly – and eventually completely -- dependent on caregivers for day-to-day activities such as eating, bathing, and dressing. Ongoing, high quality bedside care is essential to avoid – to the extent possible -- complications such as bedsores and aspiration. Failing to turn and reposition a bedbound elder for as little as five to ten hours can initiate a bedsore, which can rapidly progress to a deep, infected, ugly wound.  Likewise, people with dementia should never be force fed – even so much as putting food in their mouths when they show no interest in eating – as this will almost guarantee their inhaling these oral contents into their lungs and getting pneumonia. 

Pressurepoints for bed-bound patients

Medications and Challenges in Alleviating Dementia Symptoms

Reversal of cognitive injuries associated with dementia such as impaired memory and loss of executive function – like the ability to balance a checkbook or make a phone call -- is currently not possible; medications including oral cholinesterase inhibitors such as rivastigmine (Exelon) and donepezil (Aricept) and the new FDA-approved intravenous antibody therapies aducanumab (Aduhelm) and lecanemab (Leqembi) – administered every two to four weeks and costing $25,000 -- $30,000 per year – are used in early to moderate dementia to slow the progression of the disease and show varying efficacy – working better in some than others. The effects of these medications on everyday activities such as the ability to dress independently -- in contrast to delaying loss of memory and cognition -- are also variable, not possible to predict in any given individual, and may be minimal. Another concern is side effects; cholinesterase inhibitors commonly cause nausea, diarrhea, vomiting, decreased appetite, stomach upset, muscle cramps, fatigue, insomnia, dizziness, headache, and lack of energy, while the newer therapies may cause swelling and bleeding in the brain. 

Exploring Underlying Causes of Dementia and Treatment Strategies

Several approaches may help to manage behavioral problems such as combativeness and agitation and should start with a search for underlying causes such as an infection or pain. Agitation caused by a medical condition is called delirium, which when treated may lead to resolution of the behavior and a far calmer loved one. Many elders with dementia have chronic painful conditions such as osteoarthritis or spinal stenosis and express their distress with restlessness and behaviors like repeatedly climbing out of bed instead of using words to describe their distress; this makes a trial of mild analgesics such as Tylenol a reasonable first step. Some may need more potent drugs such as opioids, as is seen commonly in hospice patients with dementia. Bedsores, for example, can be very painful. Urinary tract infections (UTIs) may also cause delirium, with the behavior resolving after a course of antibiotics. In the absence of obvious symptoms such as painful urination, flank pain, or fever, which may merit starting antibiotics immediately, however, investigation of UTI requires a urine culture to establish the diagnosis and avoid potential serious side effects of antibiotics such as severe allergy causing difficulty breathing or clostridium difficile diarrhea – “c diff” – which can be life threatening and easily spread to other, healthy people.

Creating Tranquil Environments for Agitated Elders with Dementia

Other means of calming an agitated elder are environmental and behavioral, such as assuring a calm, quiet, familiar setting, soothing music, offering food when desired, turning out lights and turning down noise at night to allow sleep, and the presence of known loved ones. A chaotic, unfamiliar environment, with strangers randomly coming in and out of the room, absence of friends and family, constant light and noise, and painful procedures that interfere with sleep such as 5AM blood tests – done at this hour in hospitals to make results available for doctors’ morning rounds – may precipitate agitation, or make preexisting agitation worse. Hospitalization, often characterized by these negative environmental factors, can not only precipitate agitation, but accelerate the cognitive impairments and loss of ability for self-care that characterize dementia. Hospice staff hear again and again about elders with mild dementia who were still able to care for themselves before being hospitalized who were rendered bedbound and fully incapable of self-care after a one-week hospital stay. Sometimes, hospice staff are able to calm elderly people simply by seating them in a recliner at the nurse’s station and talking to them as they go about their business.

Nurse and female patient joining hands

Addressing Psychiatric Comorbidities and Medication Approaches in Dementia Care

Underlying psychiatric illness such as depression, anxiety disorder, bipolar disorder, and psychosis such as schizophrenia may also trigger behavioral disturbances in demented elders, making treating these conditions – especially in people with preexisting diagnoses of psychiatric illness – another approach.

Finding an underlying cause of agitation is, unfortunately, the exception and not the rule in dementia, making the use of medications to try to treat delirium of unknown cause a reasonable next step. This, too, can prove difficult and is hit or miss. Numerous studies have been conducted to investigate which drug works best for which type of behavioral problem in which type of dementia, with mixed and limited findings. Drugs used include cholinesterase inhibitors, antidepressants including selective serotonin inhibitors such as escitalopram (Lexapro), sedatives such as trazodone (Desyrel) and lorazepam (Ativan), intended to improve sleep, anti-anxiety agents such as diazepam (Valium) and lorazepam, antiepileptics such as carbamazepine (Tegretol), and antipsychotics such as haloperidol (Haldol), risperidone (Risperdal), and quetiapine (Seroquel). It is always the goal of hospice staff to try to calm elders without sedating them so they can engage meaningfully with family and friends. 

Preserving Dignity for Dementia Patients in Hospice Care

We treat pain and urinary infections where appropriate, establish a calm and soothing environment, assign staff and volunteers to sit at the bedside to talk and read to patients, have members of our arts department play live music for them, seat them collegially at the nurse’s station, try to assure their sleep with moderate doses of sedatives at night in a dark, quiet room, and allow their loved ones to visit 24-7. If these interventions don’t work, we use antipsychotics and other medications that are less sedating and do not escalate to higher doses of sedating agents until all other interventions have been tried and exhausted. At times, rendering someone sleepy or unconscious may be the only way to relieve agitated delirium, a symptom that may be as distressing for our patients and their loved ones as severe pain or shortness of breath.

In all cases, our goal is to maintain the dignity and humanity of all of our patients to the extent that is humanly – and medically – possible. 

Family gathered around patients bed
medical staff teaching student on floor at Connecticut Hospice

Exploring Educational Opportunities at The Connecticut Hospice

In the ever-evolving landscape of medical education, institutions that prioritize hands-on experience, interdisciplinary collaboration, and compassionate care are invaluable. The Connecticut Hospice stands out as a beacon of excellence, offering a myriad of educational opportunities for pre-med students, medical students, residents, and fellows. This blog post will delve into the educational programs provided by The Connecticut Hospice through the John D. Thomas Institute and shed some light on how they contribute to the development of well-rounded and empathetic healthcare professionals.

History and Mission of The Connecticut Hospice

Before delving into the educational offerings, it's essential to understand the foundation upon which The Connecticut Hospice stands. Established in 1974, it holds the distinction of being the nation's first hospice. Its mission revolves around providing patient-centered, end-of-life care rooted in compassion, dignity, and respect. This commitment to holistic care forms the backbone of the educational opportunities offered. 

The John D. Thompson Hospice Institute for Education, Training and Research, Inc. (JDT Institute), the educational ally of Connecticut Hospice, was established in 1979, when it gave its first educational conference.  The JDT Hospice Institute is a vehicle for sharing the hospice philosophy with all who desire to improve the quality of care for patients (and their loved ones) experiencing an irreversible illness.  It offers opportunities for students, health care professionals, administrators, caregivers, and the lay community to learn, and gain experience and skills in hospice care.

At the core of good hospice care is the interdisciplinary team approach.  Every patient is cared for by a team that includes medicine, nursing, social work, spiritual, bereavement, pharmacy and volunteers.  The team ensures the patient receives care at the physical, mental, and/or emotional levels, if and when needed during their journey.  Connecticut Hospice offers clinical rotations in medicine, nursing, social work, and pharmacy.        

Student Shadowing Opportunities

Traditionally the first milestone in the long journey to becoming a practicing healthcare provider is usually shadowing other providers. Here at Branford, we offer extensive shadowing opportunities. Students can observe seasoned healthcare professionals navigating the challenges of end-of-life care, learning not only medical procedures but also the nuances of compassionate communication both in our inpatient unit as well as with our homecare team. Recognizing the importance of early exposure to hospice and palliative care, The Connecticut Hospice offers pre-med programs designed to ignite the interest of aspiring healthcare professionals and expose them to the realities of practicing medicine in our current healthcare system as well as mentor them to the requirements of applying to graduate professional programs. 

UCONN Pharmacy student standing with Connecticut Hospice mentor

Student Clinical Experiences

Students approved to complete clinical hours at The Connecticut Hospice are afforded a unique and enriching experience. Although many come from schools in the Northeast, the opportunities to rotate here are open for all institutions across the country. The institution recognizes the importance of exposing future physicians, nurses, social workers, art therapists, music therapists and pharmacists to end-of-life care, fostering empathy, and refining communication skills. Through structured programs, students have the chance to shadow experienced practitioners, and engage in patient care activities under the guidance of experienced mentors. This hands-on experience allows them to apply theoretical knowledge in a real-world setting, honing their clinical skills and deepening their understanding of the unique challenges in end-of-life care. 

Throughout COVID, and the nursing shortage, Connecticut Hospice worked with area nursing programs to provide clinical practice hours that were standing in their way of graduating and joining the dwindling nursing pool.  Yes, it is about teaching how to provide good hospice and palliative care, but it is also about sharing the importance of both hospice and palliative care in the cycle of terminal illness. 

Interdisciplinary Rounds   

The Connecticut Hospice places a strong emphasis on interdisciplinary collaboration. Learners here actively participate in rounds that bring together physicians, nurses, social workers, and other healthcare professionals. This approach provides a holistic view of patient care, fostering an understanding of the diverse skills required in end-of-life medicine.

Medical personnel standing in circle on hospital floor

Residency, Fellowship, and Advanced Degree Rotations   

For medical residents seeking to specialize in palliative care or related fields, The Connecticut Hospice offers comprehensive clinical exposure to end of life medicine. Residents may come from any ACGME accredited program and specialty. These programs provide a structured curriculum that combines clinical experience, research opportunities, and mentorship in a variety of inpatient and outpatient settings. Rotating residents at The Connecticut Hospice benefit from a diverse range of clinical experiences. From managing complex symptoms to leading family meetings, residents are actively involved in the care of patients facing life-limiting illnesses. This exposure equips them with the skills necessary for providing compassionate and effective end-of-life care.

Students earning an advanced degree in nursing, social work, art therapy, music therapy or pharmacy spend a significant amount of time at Connecticut Hospice, quickly becoming a member of the care team and gaining unique experiences from collaborating care.  

Social Workers pursuing a Masters spend their entire final year with us, allowing them the opportunity to learn from a seasoned social worker how to best guide a patient and their family through one of the most stressful events of life, death of a loved one.  There are so many factors to consider when caring for a family unit, especially when death is at the core.  It takes time for a social worker to become comfortable with the unique needs of a hospice population and the extended time allows for learning and experiencing from the seasoned social worker.   

Four Hospice Fellows welcomed by Hospice CEO Pearce

Exploring Innovations in Palliative Care Research at Connecticut Hospice

The JDT institution encourages learners across the spectrum of academia to engage in research projects that contribute to the evolving field of palliative care. By collaborating with experienced researchers and faculty members here at the Connecticut Hospice, learners get the opportunity to explore innovative approaches to symptom management, psychosocial support, and ethical considerations in end-of-life care and receiving the structured mentorship to pursue their own individual projects.  

Every PharmD candidate who completes a month-long rotation with Connecticut Hospice’s onsite Pharmacy Department is required to present findings on a pharmacological topic selected prior to the start of their rotation.  The findings are presented on the student’s final day to members of the interdisciplinary team who were all part of the learning experience.  The collaboration between a student and those with heavy experience can create something great.  

Mentorship and Professional Development

Mentorship plays a pivotal role in the residency programs at The Connecticut Hospice. Our learners work closely with our seasoned professionals who provide guidance not only in clinical matters but also in navigating the emotional and ethical dimensions of palliative care, as well as preparing for the next step in their own professional journeys. 

Healthcare Administrative Internships

If clinical medicine isn’t desired, The Connecticut Hospice also can offer unique individualized internships with our senior management and executive teams. Rotating through our non-profit and working directly with our executives provides the learner with a special opportunity to collaborate closely on business development plans and network with regional partners. 

Hospice Care and Palliative Care Educational Workshops

The Connecticut Hospice's offers tailored programs and educational workshops that cover the basics of palliative care, hospice care, pain management, and the psychosocial aspects of end-of-life care. These workshops serve as a bridge between classroom learning and practical application in the community. We offer these experiences and lectures to our community partners and travel to them to deliver these interactive and informative sessions.  

Healthcare students sitting at tables learning

Volunteer Opportunities at Connecticut Hospice

In addition to the above, The Connecticut Hospice offers a robust and enriching volunteer experience. These hands-on experiences allow each person to donate their time and/or talent to our patients in a multitude of ways. Each new academic year provides Connecticut Hospice with more than 75 medical students looking to volunteer to gain experience working with patients and families.  These future healthcare providers create a positive energy that fills the building.  In addition to these medical students, Connecticut Hospice is always in need of volunteers to share their talents with us.  If you or your organization is interested in volunteering, please reach out to our Director of Volunteers at [email protected].  

male volunteer pushing hospice patient in wheelchair outside

Shaping Future Healthcare Leaders: The Connecticut Hospice Commitment

The educational opportunities offered by The Connecticut Hospice form a critical component of the institution's commitment to advancing the field of hospice and palliative care.  No matter what a student’s ultimate position is in healthcare, Connecticut Hospice encourages them to take the unique experiences offered at America’s first hospice to enable them to be the best they can be throughout their career.  By combining hands-on experiences, interdisciplinary collaboration, and a commitment to compassionate care, The Connecticut Hospice is shaping the next generation of healthcare professionals who will navigate the complexities of end-of-life medicine with skill, empathy, and resilience. As we look toward the future of healthcare, the lessons learned at The Connecticut Hospice serve as a guiding light for those dedicated to providing dignified and compassionate end-of-life care.

For more information on clinical rotations at Connecticut Hospice, email [email protected].

wpman with the back of her head floating away in pieces, representing memory loss

Dementia: A Complex Journey

Dementia is a complex and debilitating condition characterized by cognitive decline, memory loss, and impaired daily functioning. As the disease progresses, patients often reach an advanced stage where their functional abilities decline significantly. The Functional Assessment Staging Tool (FAST) serves as a valuable instrument for assessing and staging the progression of dementia, particularly in its advanced stages. This blog post aims to delve into the FAST, elaborate on the score needed for hospice eligibility, describe common characteristics of end-stage dementia, and touch upon different types of dementia and highlight how the decline can vary among these types.

FAST Score: Tracking Dementia Progression

The Functional Assessment Staging Tool (FAST) is a widely recognized and validated instrument used to assess the functional abilities of individuals with dementia. It was developed by Barry Reisberg, MD, and his colleagues in the late 1980s to provide a structured framework for staging the progression of Alzheimer’s dementia based on functional impairment. The FAST consists of seven stages, each representing a distinct level of cognitive and functional decline.

FAST ScoreDementia StageDescription
Stage 1No Cognitive DeclineNormal cognitive function and memory. No observable symptoms of dementia.
Stage 2Very Mild Cognitive DeclineSlight cognitive changes attributed to aging. Forgetfulness and mild difficulty finding words.
Stage 3Mild Cognitive DeclineNoticeable cognitive impairment. Frequent memory lapses. Challenges in work or social settings.
Stage 4Moderate Cognitive DeclineMore pronounced cognitive deficits. Intensified memory loss, reduced problem-solving, and attention.
Stage 5Moderately Severe Cognitive DeclineSignificant cognitive and functional deficits. Memory deterioration, confusion about time/place.
Stage 6Severe Cognitive DeclineProfound cognitive impairment. Difficulty recognizing loved ones, memory loss, personality changes.
Stage 7Very Severe Cognitive Decline (Subclassification A-F)Total functional dependence. Challenges in mobility, communication, and basic tasks.
7ASpeaks 5-6 words during the dayLimited verbal communication ability.
7BSpeaks only 1 word clearlySeverely restricted verbal communication.
7CNo longer can walk without assistanceMobility challenges, walking assistance required.
7DCan no longer sit upInability to sit up unassisted.
7ECan no longer smileLoss of ability to smile.
7FCan no longer hold their head upInability to hold head up without assistance.
A chart representing the FAST Score and the stages of dementia progression:

Overview of the FAST Score stages and their corresponding descriptions in the progression of dementia.

Stage 1: No Cognitive Decline

Stage 2: Very Mild Cognitive Decline

Stage 3: Mild Cognitive Decline (Early Stage)

Stage 4: Moderate Cognitive Decline (Mid-Stage)

Stage 5: Moderately Severe Cognitive Decline

Stage 6: Severe Cognitive Decline

Stage 7: Very Severe Cognitive Decline or End Stage Dementia with Subclassification A-F. 

The FAST score assists healthcare professionals, caregivers, and families in assessing the level of cognitive and functional decline, enabling them to provide appropriate care and support tailored to each stage. By understanding the implications of each stage, individuals can ensure the best quality of life for those living with Alzheimer’s dementia while navigating the challenges that arise throughout its progression. It's important to note that while the FAST provides a structured framework for understanding Alzheimer’s dementia progression, the exact experience can vary among individuals. Additionally, the rate at which individuals progress through the stages may differ based on factors such as the type of dementia, overall health, and individual characteristics.

Hospice Eligibility and FAST Score

Medical forms

Hospice care is a specialized form of medical care aimed at providing comfort, support, and quality of life for individuals with life-limiting illnesses, including advanced dementia and neurocognitive disorders. Determining hospice eligibility involves a comprehensive assessment of the patient's medical condition, functional status, and prognosis. The Functional Assessment Staging Tool (FAST) score, along with Medicare's Local Coverage Determination (LCD) for dementia and neurocognitive disorders, plays a significant role in determining hospice eligibility for individuals with these conditions. Generally, a FAST score of 7A or higher is considered indicative of end-stage dementia, indicating that the individual's cognitive and functional impairments have reached a point where specialized end-of-life care is necessary.

Individuals with a FAST score of 7A or higher often require assistance with most, if not all, activities of daily living (ADLs). These activities may include eating, dressing, bathing, toileting, and mobility. Additionally, they may experience communication challenges, memory loss, and an overall decline in cognitive abilities. The FAST score helps healthcare professionals, caregivers, and families make informed decisions regarding the appropriate level of care, including hospice services, to ensure the individual's comfort and well-being.

Medicare, the federal health insurance program in the United States, covers hospice services for eligible beneficiaries. Medicare's Local Coverage Determination (LCD) provides guidelines for determining hospice eligibility based on the specific medical condition, prognosis, and functional status of the individual. For individuals with dementia and neurocognitive disorders, the LCD outlines the criteria that need to be met for hospice coverage.

The LCD typically includes criteria related to cognitive impairment, functional decline, and the overall trajectory of the disease. It may require documentation of a qualifying FAST score, indicating the individual's advanced stage of dementia. Additionally, the LCD may consider other factors such as recurrent infections, declining nutritional status, and overall decline in medical condition. Meeting these criteria ensures that individuals receive the appropriate level of care, focusing on comfort and symptom management.

Types of Dementia & Their Progression Patterns

Brain aging and memory loss due to Dementia and Alzheimer's disease with the medical icon of a group of color changing autumn fall trees in the shape of a human head losing leaves as a loss of thoughts and intelligence function.

Dementia is an umbrella term that encompasses several types of neurodegenerative disorders, each with its unique characteristics, underlying causes, and progression patterns. Understanding these different types of dementia is necessary for providing appropriate care and support to individuals affected by the condition. Let's delve into the various types of dementia and their distinct features:

1. Alzheimer's Disease:

2. Vascular Dementia:

3. Lewy Body Dementia (LBD):

4. Frontotemporal Dementia (FTD):

5. Mixed Dementia:

6. Other Rare Dementias:

Each type of dementia presents its unique challenges and progression patterns. Understanding the differences is crucial for accurate diagnosis, effective management, and tailored care plans. Healthcare professionals, caregivers, and families must be knowledgeable about these variations to provide the best possible support and enhance the quality of life for individuals affected by dementia. Early diagnosis, appropriate interventions, and compassionate care play vital roles in improving the well-being of those living with dementia and their loved ones.

Hospice's Role in Dementia Care

In the realm of dementia care, hospice services emerge as a beacon of compassion and comfort, providing a sanctuary for individuals navigating the challenging journey of advanced dementia. Hospice care becomes an essential companion during this critical phase, offering specialized support that enhances both the quality of life of patients and the emotional well-being of their loved ones. As individuals with advanced dementia face the formidable decline in cognitive and functional abilities, hospice steps in to offer solace, dignity, and a comprehensive approach to care that is as empathetic as it is effective.

For patients with advanced dementia, hospice services serve as a lifeline, offering tailored care that focuses on pain management, symptom relief, and emotional well-being. Hospice professionals possess a deep understanding of the nuanced needs of individuals in end-stage dementia, providing expert guidance to alleviate discomfort, anxiety, and distress. Through carefully designed interventions, hospice services enhance patients' comfort, fostering an environment of tranquility that nurtures their dignity and humanity. The holistic care approach encompasses not only the physical aspects of care but also addresses the emotional and psychological well-being of both patients and their families.

Support for Families

Elderly mother and daughter working a puzzle

Loved ones of individuals with end-stage dementia can find solace in the embrace of hospice care, as it offers not only practical support but also a compassionate presence during this profoundly challenging period. Hospice teams work closely with families, helping them navigate the complexities of dementia care, offering respite, education, and emotional guidance. Family members can expect a multidisciplinary team that includes nurses, doctors, social workers, counselors, and volunteers, all dedicated to creating a nurturing environment that preserves the dignity and comfort of the patient. As the progression of dementia can be emotionally demanding for families, hospice also provides much-needed psychological support, helping loved ones cope with grief and make the most of the time they have left with their cherished family member.

A Testament to Compassion

Elderly woman with her nurse in the nature

In the realm of dementia care, hospice services shine as a beacon of compassion and empathy. Through their expertise, dedication, and unwavering commitment, hospice professionals offer patients with advanced dementia the opportunity to transition with grace, comfort, and respect. Families can expect not only comprehensive care for their loved ones but also a support system that holds their hands through the challenges of end-stage dementia. In the final chapter of the dementia journey, hospice care becomes a testament to the power of human connection and compassion, reminding us that even in the face of decline, every individual's story deserves to be honored and cherished.

doctor with hand out holding the words Advanced Medical Directives

Every Adult Should Have a Legally Enforceable Advance Directive

No matter your age or health status, a properly executed Advance Directive is essential to assure you receive healthcare that aligns with your beliefs and wishes. Even the young and healthy may find themselves in an unanticipated medical situation in which an Advance Directive is critical.

What Is an Advance Directive?

An Advance Directive is a legal document that allows you to maintain control over the healthcare you receive should you be in a circumstance where you are unable to communicate your wishes to your healthcare providers.

What Kind of Advance Directives Are There?

There are four types of Advance Directives in Connecticut:

Which Type of Advance Directive Is the Best One to Have?

Which Advance Directive to choose depends on your wishes, your understanding of the limitations of each type of Advance Directive, and your state of health. First, let’s review the healthcare representative. Before we do, though, some confusion about this form of Advance Directive needs to be cleared up. In addition to the term “healthcare representative,” you may also hear the phrases “healthcare agent,” and “durable power of attorney for healthcare.” Each of these is essentially the same, and Connecticut officially replaced the latter two terms with the former on October 1, 2006. In keeping with this, I will use “healthcare representative” going forward to refer to this form of Advance Directive.

What Is a Healthcare Representative?

A healthcare representative is legally designated by an individual to make their healthcare decisions should they no longer be able to communicate — for example, they are unconscious and cannot talk or write. In contrast to the other types of Advance Directive, a healthcare representative offers the most flexibility in directing doctors and other healthcare workers no matter the now-incapacitated person’s medical circumstance. A Living Will cannot be honored unless specific criteria are met and may not allow medical providers reasonable flexibility in the care they provide (discussed below). A Connecticut MOLST is also very specific, and is only legally used for people with serious illness (also discussed below).

How to Appoint a Healthcare Representative.

Designating a healthcare representative is easy and does not require a lawyer or Notary Public. Your healthcare representative should be a person — many people designate a good friend -- who will follow your wishes for care with a lesser likelihood of being so emotionally involved as to find it difficult to do as you have instructed – such as a wrenching decision to discontinue life support. This is one reason why a friend may be a better healthcare representative than a close – and more emotionally involved --  family member such as a spouse, parent, or child.

Communicate Your Wishes to Your Healthcare Representative

Once you have decided who to designate as your healthcare representative – and once they have agreed to take on this important role (an alternate representative may also be designated should your primary representative be unavailable or decline to make decisions), it is imperative to have a conversation with them about what your wishes would be in a variety of circumstances. For example, some people may want more aggressive care should they become ill with a life-threatening though potentially curable illness than they would if they had a terminal illness with few treatment options and a lesser likelihood of recovery. However, it is impossible to anticipate all medical eventualities— I have tried— and one advantage of the healthcare representative is that he or she has freer rein to direct care in the spirit of your wishes – regardless of your exact medical circumstance -- than is allowed by a living will or MOLST. 

To complete your legally enforceable healthcare representative paperwork, which requires two witnesses but again does not require a lawyer or a Notary Public, download a detailed PDF outlining Advance Directive procedure in Connecticut  (including healthcare representative, Conservator of the Person, living will, and anatomic donations. MOLST cannot be completed with an online form – see below).

Choose a Healthcare Representative Before Becoming Seriously Ill

It is worth noting that you must be able to understand the consequences of your decisions to designate a healthcare representative. People who are significantly cognitively impaired, from dementia, for example, and are unable to direct a healthcare representative sensibly and reasonably, are not eligible. Likewise, someone with impaired consciousness is also not eligible. This is why it is important to choose one before becoming seriously ill. 

For the sake of completeness, if you designated a durable power of attorney for healthcare in Connecticut before October 1, 2006, that person has the same medical decision-making rights as a healthcare representative. If you designated a healthcare agent – not a representative -- prior to October 1, 2006, that person may only make decisions about withdrawing or withholding life support, not all healthcare decisions. And if you don’t have a legal Advance Directive in Connecticut, healthcare providers will look to your next of kin for decisions. In order of preference, these are your spouse, adult child, and parent -- or other relatives if they are not available.  

Doctor holding elderly patient's results

All in all, and especially considering the difficulty healthcare providers will have following instructions if family members disagree about the care you should receive, these factors make it clear that it makes far more sense to simply designate an up-to-date healthcare representative and to do it now.

What Does a Conservator of a Person Do in CT?

A Connecticut “Conservator of the Person” is an individual, often a lawyer, appointed by a Probate Court and responsible for healthcare decisions for someone who is permanently unable to care for, and communicate their healthcare decisions – such as someone with dementia. Usually, Conservators are assigned to people who have not designated a healthcare representative and are no longer capable of doing so. While a Conservator is empowered to make all healthcare decisions, their role usually relates to custodial needs— such as admission to a nursing home— although they may also make decisions about specific medical interventions. If someone with a court-appointed conservator already has healthcare representative, having designated one while they were still able, the decisions of the healthcare representative about day-to-day medical care have more authority than those of the Conservator, unless the Probate Court disagrees.

What Is a Living Will in the State of Connecticut?

A Living Will is a legally enforceable set of healthcare instructions.

These instructions require no further input from you, a healthcare representative, a Conservator, or anyone else to be followed by healthcare providers. The Connecticut Living Will provides instructions about your wishes regarding cardiopulmonary resuscitation—or CPR — mechanical ventilation (such as a respirator), artificial nutrition and hydration, (such as tube feeding), and any other specific medical requests you may choose (such as intravenous antibiotics). The Living Will, however, is very specific as to the medical circumstances in which healthcare providers can follow its directives. These include suffering from a terminal illness, permanent unconsciousness, permanent coma, or persistent vegetative state. One potential problem with the Living Will is that reasonable people may disagree on the definition of these entities. One medical provider may believe a condition is terminal, while another may feel that there are still medical treatment options. Likewise, there may be disagreement as to whether a state of unconsciousness or coma is permanent, and how exactly to define “persistent vegetative state.” Recent research in people believed to have no conscious awareness of their surroundings— part of the definition of persistent vegetative state— has shown that some patients may have more awareness than others. This may complicate matters should there be disagreement as to whether you are in persistent vegetative state. I have seen more than one situation in which it was clear that a grievously ill patient would have wanted to be taken off life support but the wording of their living will tied the hands of their healthcare providers. A healthcare representative, on the other hand, can make decisions regardless of these uncertainties, although they should not stray too broadly from your expressed wishes. For example, someone might instruct their healthcare representative to decline further medical interventions – or to stop life support -- should the likelihood of their being indefinitely and seriously neurologically impaired be high, regardless of whether they are terminally ill, “permanently” unconscious, or suffering what may or may not be persistent vegetative state. This decision is up to each individual, and is important to convey to a healthcare representative.

What is MOLST?

Connecticut Medical Orders for Life Sustaining Treatment (MOLST) is a detailed list of instructions on medical care for seriously ill people. 

Technically, MOLST is not an Advanced Directive because it specifies the medical treatment that is desired at the time the form is complete, not at some imaginary future time under some unknown medical circumstance. MOLST requires the presence of an “end stage, serious, life limiting illness” or an “advanced chronic progressive frailty condition,” is usually completed by people at significant risk of hospitalization with the risk of death in the very near future, and is very specific as to desired interventions, such as different kinds of ventilator support, ICU care, IV fluid and nutrition, and others. MOLST requires the signature of and counseling by a MOLST trained and certified physician, advanced practice registered nurse (APRN), or physician assistant, and the original lime-green form must be presented for it to be valid. More information about MOLST. 

The Online Molst Form Is Not Valid!!

Again, a valid MOLST requires you be counseled by a trained and certified MD, DO, APRN, or PA, and have a signed, original lime green MOLST form. Counseling is imperative -- I have more than once seen incorrectly completed MOLST forms – requesting, for example, both comfort-measures only and life support – unnecessarily complicate care. 

The bottom line? At the very minimum, if you are able to read and understand this blog, get to work on designating your legal healthcare representative right now

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