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Caring for patients in a hospice setting is a nurturing and supportive effort that draws on the expertise of professionals engaged in many disciplines, ranging from medical to therapeutic. Indeed, the services offered by a leading hospice, such as The Connecticut Hospice, may in fact be broader and the care offered patients more varied than what is typically pictured by members of the public.
Even so, hospice-service providers remain concerned about the number of persons accessing hospice care late in the course of an illness. That’s per a new report issued by the National Hospice and Palliative Care Organization (NHPCO), which states that “53.8 percent of Medicare beneficiaries received hospice care for 30 days or less in 2018.”
More telling, is that fully a quarter (27.9 percent) of the beneficiaries received care for seven days or less— which NHPCO considers “too short a period for patients to fully benefit from the person-centered care available from hospice [providers].”
“This annual report provides a valuable snapshot of hospice care access and care, and also a reminder that we must continue to strive to make hospice care more equitable and accessible,” said Edo Banach, NHPCO president and CEO, in a statement. “It is also important to remember that behind these numbers are people who rely on person- and family-centered, interdisciplinary care to help them during a time of great need.”
Of compelling interest to hospice patients and their family members and friends are sections within the full 26-page report on what hospice care entails, how and where that care is delivered to patients, and what are the levels of care provided.
“Hospice focuses on caring, not curing,” NHPCO observes. “Considered the model for quality compassionate care for people facing a life-limiting illness, hospice provides expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s needs and wishes. Support is provided to the patient’s family as well.”
The report also points out that, in most cases, “care is provided in the patient’s home but may also be provided in freestanding hospice facilities, hospitals, and nursing homes and other long-term care facilities. Hospice services are available to patients with any terminal illness or of any age, religion, or race.”
Indeed, the term “hospice” is somewhat elastic. It describes any approved provider of hospice services, including those that operate free-standing hospice inpatient hospitals and those that bring hospice care directly to patients where they are, be that a long-term care facility or in their own home.
The Connecticut Hospice (also known as CT Hospice) fits both descriptions, as it operates its own hospice hospital in Branford and fields teams of hospice medical professionals and caregivers to provide services at other caregiving facilities where patients are residing or right in the patients’ homes.
When hospice services are provided as in home, a family member typically serves as the primary caregiver and, when appropriate, helps make decisions for the terminally ill individual, notes NHPCO. “Members of the hospice staff make regular visits to assess the patient and provide additional care or other services. Hospice staff is on-call 24 hours a day, seven days a week. The hospice team develops a care plan that meets each patient’s individual needs for pain management and symptom control.”
An interdisciplinary hospice team usually consists of the patient’s personal physician, hospice physician, nurses, hospice aides, social workers, bereavement counselors, clergy or other spiritual counselors, trained volunteers, and speech, physical, and occupational therapists, if needed.
NHPCO lists these as interdisciplinary team services:
Nancy Peer, an Associate Professor for Hospice and Palliative Care at Central Connecticut State University, secured a bed for her son, Brian, who was dying of testicular cancer, so he could live out his last weeks at CT Hospice. “Every nurse that came in was not only compassionate… they would see how our son was doing and then they wanted to know how they could help us,” Peer recently told the Daily Nutmeg of New Haven.
Peer said that during the week Brian spent at the hospice, before dying at age 39 and leaving behind his wife of one year and his parents and a younger brother, friends and extended family were able to visit him and Peer and her daughter-in-law stayed with him. She remarked that the help he and his family received from CT Hospice was “priceless.”
The NHPCO report also details the four Levels of Care (as defined by the Medicare hospice benefit) that hospice patients may require. The levels are distinguished by the intensities of care provided relative to the course of a given patient’s disease.
“While hospice patients may be admitted at any level of care, changes in their status may require a change in their level of care,” NHPCO explains. “The Medicare Hospice Benefit affords patients four levels of care to meet their clinical needs: Routine Home Care, General Inpatient Care, Continuous Home Care, and Inpatient Respite Care.”
The report rightly credits the significant positive impact of hospice-care volunteers. “The U.S. hospice movement was founded by volunteers” and they “continues to play an important and valuable role in hospice care and operations.”
But volunteering is not a simple matter of stepping up to help others. The Connecticut Hospital, for example, requires that prospective volunteers receive a background check before coming onboard and then they are professionally trained by hospice staff to provide care and assistance to patients and their loved ones.
The importance of volunteers is underscored by NHPCO’s observation that “hospice is unique in that it is the only provider with Medicare Conditions of Participation requiring volunteers to provide at least 5% of total patient care hours.”
Volunteers typically provide service to others in these three general areas:
Spending time with patients and families (“direct support”)
Providing clerical and other services that support patient care and clinical services (“clinical support”)
Engaging in activities such as fundraising, outreach and education or serving on a board of directors (“general support”)
For information on volunteer opportunities with The Connecticut Hospice, please go to our website, www.hospice.com, or contact Joan Cullen at [email protected] or 203-315-7510.
The Connecticut Hospice is America's first hospice. It was founded by Florence Wald, and a group of nurses, doctors, and clergy, in 1974 and was the first of its kind in the United States. A few years prior, Wald, then an Associate Professor and Dean of the Mental Health and Psychiatric Nursing Program at Yale University, was inspired by a palliative care lecture given by Dr. Cicely Saunders, the founder of St. Christopher’s Hospice, the first hospice in the world.
Today, CT Hospice’s services encompass both in-home and inpatient care for persons diagnosed with a terminal illness with a limited prognosis, normally of six months or less.
The Connecticut Hospice’s central commitment is to enable the patient to live as fully and completely as possible during the time of their illness. This includes supporting the entire family as the unit of care, rather than just the patient. For example, home-care programs are designed to make it possible for families to keep the patient at home if such care is appropriate, and to marshal community resources to help deepen support and keep care costs as low as possible.
About an hour after my father died, I wandered away from my parents’ den, where he lay in a rented hospital bed, and went outside to be by myself for a while. On the horizon of the cold dusk sky the January sunset was a deep blazing red, more vivid than I remember seeing before or since. I imagined Dad shooting through the sky like a flaming arrow, for he was straight and true. Or like the Greek sun-god Helios arcing across the firmament in his chariot, for he was like the sun to me. Or Old Testament Prophet Elijah spiraling up to heaven in his fiery chariot, for Dad had (briefly) suffered, and deserved this final reward. Or all of these things at once.
These images were felt by me instinctively, and I didn’t share them with my mother, my sister or my daughter - partly because they were so intense I didn’t feel I could speak them aloud, and partly because a little internal voice said that I might be perceived as being melodramatic or even superstitious. Dad was an atheist, besides, and an academic family such as ours generally needed provenance, logic, or science to believe such things, surely?
It turned out that we needed none of those things, and a few hours later any doubts I had of such ideas were firmly swept away. Sitting in the dark on the family porch, I was startled by a lone goose, who flew down unusually close to the house, only honking when right in front of me, and then flapped away. It felt like a visit, and I went inside to tell my family about this “amazing phenomenon” before returning outside to the still night air.
About half an hour later Mum came to join me, and literally as she stepped through the door, a chevron of geese swooped down lower than any ever had before, all honking wildly as they flapped by. This had to be a sign, right? Lo and behold, when my sister came out to look for us another half hour later, yet one more goose suddenly appeared out of nowhere to make its presence known.
We all clung to the belief that this had to mean something, because believing the geese were visiting for a reason, that they might even be Dad saying goodbye, brought us comfort in that bleak “dark night of the soul”.
Since then, half the birds of the northern hemisphere’s skies have become ‘symbols of Dad’, such is our wish to remain connected to him in as many ways as possible. My sister and I have talked about this – she lives thousands of miles away, on another continent, and yet she sees the same ‘signs’.
For me, noble hawks always seem to circle overhead when I need his strength;
bright, persistent cardinals pop up in the nearby hedgerow when I want to chat to him;
mated-for-life swans scud silently by to remind me of his marriage proposal to my mother on the second day they met (married five weeks later, they were soul mates for 60 years);
never-shy catbirds hop right up close and train their beady eye on me in the same piercing way Dad always did;
squabbling blue jays even bring back family silliness, when we were a family together;
ephemeral, iridescent hummingbirds are rare and colorful visitors to my yard, but he was rare and colorful too.
And the seminally symbolic geese always bring me right back to the seismic shift in our world on that evening, when at one moment he was alive with us and in the next he had wrenched himself away.
Accepting and allowing that he was gone, in intensely painful slow motion, was like a long difficult labor, delivering a new reality.
Why do human beings believe that signs and symbols from the natural world represent the presence of, or messages from, our loved ones after they are gone? For instance, many people believe that butterflies are deep and powerful representations of life. Butterflies are often thought to be a symbol of their departed loved ones or of eternal life, perhaps because of their metamorphosis from chrysalis to butterfly. Recently, Dmitri, a Connecticut Hospice staff member’s son, felt it was symbolic to release the 6 new butterflies from his Butterfly Garden on the site where hospice care first began in the United States.
Dragonflies are said to symbolize change and transformation, and are connected to signs from loved ones. Feathers, storms and rainbows are also often imbued with special meaning after a loss.
There are websites devoted to supporting the bereaved through the sharing of personal stories of ‘signs and symbols’ they have experienced. Click here for an example: signs of a deceased loved one
People often tell the recently bereaved to “look for signs – you’ll see them all around”, to reassure and comfort, and because they believe it to be true.
It seems that we try to hold onto someone we dearly miss by creating a physical manifestation where there is no longer a physical presence. That so many of these ‘messengers’ are animate entities of the natural world – animals, birds, insects, sometimes even flowers and trees – appears to bear this out.
It is well documented that nature has the power to bring solace and rejuvenation to us whether or not we are grieving, and it is plausible that we instinctively understand this capacity when we so readily ascribe special meaning to its creatures and its beauties.
Nick Cave writes
“The paradoxical effect of losing a loved one is that their sudden absence can become a feverish comment on that which remains. That which remains rises in time from the dark with a burning physicality — a luminous super-presence — as we acquaint ourselves with this new and different world. In loss things – both animate and inanimate – take on an added intensity and meaning”.
Nowadays, when Mum and I sit on the porch together, we sometimes talk about the ‘Great Creative Force” that connects all things. As an artist and woman of great wisdom, my mother can find symbolism and interconnection everywhere. Where once the anecdotes we heard about ‘signs’ from departed loved ones were possibly feasible, but mostly abstract, ideas, our family now knows and feels the truth of them.
We lost him but now he is everywhere.
Further resources:
To read Nick Cave's entire piece, click here: how to understand the experience of loss
To read an essay on birds and loss, visit: the birds scattering blue
What is the 'dark night of the soul'? To explore its interpretations, click here: the dark night of the soul - understanding amidst the absence of meaning
To hear the exquisitely beautiful "Dark Night of the Soul", Ola Gjeilo's composition for chamber choir, piano and string quartet (approx. 13 minutes), watch: Youtube: Dark Night of the Soul, Ola Gjeilo
Learn about and listen to catbird songs: All About Birds: Gray catbird sounds
All about Helios and how he is different from Apollo: Wikipedia: Helios
Hospice Caregivers are daily in the presence of people who are in need of support and comfort, whether they are a patient whose illness is causing them physical suffering or emotional angst, or they are a family member in grief for the imminent or recent loss of someone they love.
In the previous two installments of our series on Spiritual Care in Difficult Times, Connecticut Hospice Pastoral Care Volunteers explored the role they play for people feeling the pain of fear, anger or hopelessness, or for those wishing to focus on their spiritual strength, regardless of whether there is a connection to any particular faith or not. They spoke of the profound spiritual connection that can happen when they sit in silence and solidarity with another human being,.
In this third part of the series, Allison H. Fresher, Pastoral Care Volunteer at Connecticut Hospice, shares a contemplative piece about accompanying those in hardship and pain, and reports of the joy, emotional healing and opening of hearts that can come from human togetherness.
Come walk with me. We will walk along the beach together. I know there is a storm brewing this day. After all, this is the rainy season. Big, puffy clouds, filled with rain, sit heavily over our heads, unmoving, almost black. Our feet shift in the sand. Today, the water does not glisten nor reflect the sun’s rays. Rather, we see signs of the coming storm.
The tide is going out, the Sound’s whitecapped waters flowing towards the larger sea. I notice a puffy, white, ocean bird floating by us. I let go of your hand, so I can point it out to you. How amazing, I think. It rides the current, not fighting the water’s forceful flow. It seems almost joyful or certainly, at peace with the water’s chaos.
You turn your head and look. Now, we are both staring in the same direction. We join our hands again, holding them tightly. Together, we stand there, captivated.
God grant me the serenity
To accept the things I cannot change;
Courage to change the things I can;
And wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace*
*These lines excerpted from the Serenity Prayer, written by Reinhold Neibuhr in the 1940's
In acceptance, we find peace. In times of hardship, joined together, unexpected gifts captivate us. Joy can arise from sorrow. We may smile with fond memories or feel strengthened through forgiveness, given or received. Through our pain, spirituality may be discovered or reborn. In times of trial, these outcomes can happen; they often do happen. Yet, there may also be doubt.
When I enter a patient’s room, I sometimes perceive a patient or family member erecting an invisible wall. Due to real world experiences, some may fear that I will attempt to preach over their doubt, convert them to a particular faith tradition, or proselytize. Others may believe that, since we walked different paths in life, we cannot relate. I have had many of these same feelings, and so, I empathize.
As pastoral care providers, we respect difference and acknowledge doubt.
Answers to the hardest questions are elusive; as humans, simply put, there are mysteries.
Healing takes time, and acceptance can be hard won.
At Connecticut Hospice, we experience with our patients, their families, and even staff members, the broad range of emotions arising from pain.
Sometimes, we are the students, and our wonderful patients are the teachers.
Other times, we help those in need find their way to healing, faith and hope.
Either way, the most perfect gift is exchanged.
Our hearts are opened.
We are here to take the walk with you, looking out at the stormy sea together. Know this; in our humanness, even while in the worst pain, there is a path to acceptance and joy. At Connecticut Hospice, it has been a privilege to witness this powerful journey, over and over again.
The sun does come out, and the light again shines.
Further resources suggested by Allison:
https://tinybuddha.com provides simple wisdom for complex lives.
https://www.beliefnet.com helps people find and walk a spiritual path that instills comfort, hope, strength and happiness.
http://www.contemplativeoutreach.org provides resources in support of contemplative prayer, bringing calm and stillness to a hectic world.
In addition, readers should be encouraged to reach-out to the Connecticut Hospice Pastoral Care Department for helpful prayer resources aligned to each faith background:– 203-315-7512.
NPR's Life Kit always features many useful resources, but we couldn't agree more with the timeliness and importance of their recent offering "End-of-Life Planning is a "Lifetime Gift" to Your Loved Ones".
Author Kavitha Cardoza points out how difficult it is for many people to talk about, and plan for, death.
"That's a big mistake, because if you don't have an end-of-life plan, your state's laws decide who gets everything you own. A doctor you've never met could decide how you spend your last moments, and your loved ones could be saddled with untangling an expensive legal mess after you die".
Cardoza presents a list of six tasks with input and detail from additional experts. The recommendations are offered not only to make the end of your life smoother, more manageable, and adherent to your own choices, but also to make the process and the time after you are gone much easier for your loved ones to navigate.
Her recommendations are in no way offered as legal or medical advice, but are presented in simple steps to get you started.
To read the article, or listen to the audio, click here: NPR Life Kit: End-of-Life Planning is a "Lifetime Gift" to your Loved Ones
Summer is here, and the natural world is exploding with life. While so many human beings stayed at home this spring, you may imagine what a ‘field day’ plants and animals have had. Our connection to all things growing is as old as our species, and we reap a myriad of benefits when in touch with nature - rejuvenation, stress-relief, increased health, sustenance, joy, creative inspiration, to name just a few.
For those unable to get outside because of social isolation or activity-limiting illness, there are many alternative routes to those life-enhancing rewards.
In this series we will discuss why and how nature is so beneficial to us and we’ll share some resources to help you bring some of the natural world to your own environment, wherever you are.
In later installments of the series we will visit the world of trees, which we know give us improved health in ways large and small. Their ability to provide oxygen, shade, medicine, and beauty is unmatched in our planet’s flora. Later, we’ll journey to the wilderness and find out how the natural landscape can improve our wellbeing and inspire our creativity, even when we are sitting indoors.
In Part 1 we start closer to home, as we explore gardens, gardening, and the therapeutic role played in our lives by our involvement with plants.
The human instinct to control our natural environment seems to have existed from our earliest days. Once we mastered the hunting and growing of ample food supplies, evidence teaches us that our ancestors began to design and plant for pleasure. Human knowledge of plant life expanded through trial and error to include nutritional, medicinal, and eventually purely aesthetic uses. When we looked at a beautiful landscape perhaps the pleasure we felt gave us the urge to try to reproduce it.
For millennia, gardens have been created as places of solace, escape, and relaxation. They have been catalysts for creativity, inspiring countless works of visual, literary and musical art. Their design is seeded in the imagination and nurtured by experiment and conditions, the only ‘rules’ being those of climate and space.
Ranging from the most grandiose and formal to a few simple containers on a sunny windowsill, there is a style to please everybody. Whether private or public, gardens can be manifestations of personal statement and cultural pride. They are sites of solitary, family, or community activity, which know no boundaries of age, geography or wealth. During times of war and, recently, pandemic, edible produce has been raised in ‘victory’ gardens, allotments, small plots and indoor pots. Anyone can garden with a minimum of material, (and most gardeners love to share or swap); very few people are immune to the enjoyment of being in one.
Before we continue, take a moment to enjoy this gallery of plants and gardens, and observe your responses to each of them:
There is a quiet thrill to be found in cultivating a life force other than our own, and wonderful moments of surprise when plants enforce their own will and spring up in unexpected places. As we nurture gardens, so do they nurture us.
Beyond their cultural, historical and social importance, gardens and gardening provide profound physiological benefits. They stimulate all our senses. One or two plants in an indoor pot can do this, or a richly planted garden outdoors. We know that aromas can trigger memories, colors can affect our emotions, shape and form feed our ability to use logic and enhance memory. Likewise, certain natural sounds can reduce our heart rates, and the taste of something healthy and fresh can encourage appetite. The physical activity of gardening on any level can improve fitness and motor ability.
Because they engage all these senses, it is clear that gardens bring huge rewards. For persons with cognitive deficits or impaired motor skills, they have a particular value: – the cerebral cortex of the brain, where sensory information is processed, is stimulated by the sights, smells, sounds, tactile textures, and taste of plants and gardens. The cerebral cortex is also where motor function is controlled and voluntary movement regulated, and it is the area of the brain responsible for processing language, planning and organizing.
The physician and writer, Oliver Sacks, explains the value of gardens:
"As a writer, I find gardens essential to the creative process; as a physician, I take my patients to gardens whenever possible. All of us have had the experience of wandering through a lush garden or a timeless desert, walking by a river or an ocean, or climbing a mountain and finding ourselves simultaneously calmed and reinvigorated, engaged in mind, refreshed in body and spirit. The importance of these physiological states on individual and community health is fundamental and wide-ranging. In forty years of medical practice, I have found only two types of non-pharmaceutical “therapy” to be vitally important for patients with chronic neurological diseases: music and gardens." (from “Why We Need Gardens” in Everything in its Place: First Loves and Last Tales).
This year more than ever, many of life’s most sustaining activities have by necessity become virtual ones. While many of us may not be able to travel or experience the beauty of gardens in person, the internet can take us there with a larger number of options and more stunning videography than ever before.
The New York Botanical Garden, a National Historic Landmark and the largest Garden in any city in the United States, is a wonderful source of information, beauty, and escape. Their website offers marvelous virtual tours through their gardens, ranging from spring flowering bulbs and blossom trees to roses in high summer. Tutorials by NYBG experts can be found there and on YouTube to help you with indoor plants and outdoor flowers and shrubs. If you want to grow some of your own fresh vegetables their website also features guides especially tailored for children and beginners.
Click here to tour the gardens or watch their free tutorials: New York Botanical Garden at home
If you would like to explore some of Great Britain’s famed gardens, including Kew Gardens, National Trust sites and The Royal Horticultural Society’s Chelsea Garden Show, this collection of virtual tours is not to be missed: Enjoy virtual British gardens
Whether in real life or virtually, the pleasure we can take in gardens and gardening is available to us in every season. We observe in the life cycles of the natural world an echo of our own finite existence, but there is comfort there in abundance. The careful preparation of a plant pot or a flower bed, and the expectant anticipation of our success, feed our sense of hope. The excitement of seeing a young shoot first emerge from our soil is hope brought to fruition.
"And don't think the garden loses its ecstasy in winter. It's quiet, but the roots are down there riotous." - Rumi
Click here to read more about the the physical and mental benefits of gardens
To read a recent study comparing the health effects of natural vs city landscape click here: Experimental Study on the Health Benefits of Garden Landscape
To read about gardens in history:
Throughout the COVID-19 pandemic, the Medical Director at Connecticut Hospice, Dr. Joseph Sacco, has kept staff and volunteers well-informed of policy changes, PPE protocols, local and national COVID-19 data, and much more, through a “Daily Update” email.
He has also tested staff frequently for coronavirus to ensure a safe environment for all, and helped to care for non-COVID and COVID-positive patients alike, with his colleagues on the Interdisciplinary Team.
Some of the most appreciated and morale-boosting gestures he has shared with staff in his Daily Updates are the jokes and contests he has inserted at the end of each email.
A recent Haiku contest drew entries from almost every department of this non-profit organization - Nursing, Dietary, IT, Security/Building Services, Arts, Medicine, Social Work, Volunteers, Business office, & Administration. No subject was off-limits, although the COVID crisis was clearly on many minds. To read the entries, scroll below.
More recently, Dr. Sacco invited Connecticut Hospice staff to submit photographs on the theme “Beauty in Adversity”.
Window visits, at work and at home, were one recurring theme; social isolation featured prominently too. But love, family, humor and resilience were in strong evidence throughout.
We invite you to enjoy some of the submitted photographs, and may you find your own beauty in adversity.
Got both my gloves on
Ignoring my ear rug burn
Caused by my tight mask
Helping families
Supporting dying loved ones
Through their hardest times
I am leaving earth
Skies are calling me to go
My nurse lifts me up
My nurse blesses my
Last breath as I float away
No pain, only love
There was a big tree
That was in the blue ocean
We love that big tree
We will live to fight
That dreaded Covid nineteen
We will hug again
Our workers need masks
So who are you gonna call
Gonna call Batman
Dress in blue scrubs again
Think about some jewelry. Nah.
Lipstick on a pig.
Wash your hands, be safe
Put on a face mask people
Social distance now!
Patience takes hard work
Humans need much more practice
Smiling helps a lot
Gloomy rainy skies
Give way to sunny weather
I want summer heat
This too shall pass then
We will celebrate our work
Each other our caring
Can’t keep my mouth shut
The filter has big holes
Orange looks good on me
Another day home
Yet one more day staying home
Flattening the curve
Three days in the past
Or three days in the future
Fourteen days from then
alone a woman dies
fever ablaze yet pallid
breath halts then expires
Bud, breeze, buzz and bloom
Harken to our higher self
Faith in renewal
My feet in the sand
A frozen drink in my hand
Please bring on summer
In a world ablaze
We cry for our leaders help
The silence deafens
Touch my cheek softly
Say goodbye without weeping
Heaven awaits me
Fearsome pandemic
Exceptional caring folks
Clouds will part some day
Row, row, row our boat
Covidly down the stream, Life
Is NOT but a Dream
Homeschooling my kid(s).
Home care patients need me, too.
Remember to breathe.
Need toilet paper...
#askingforafriend
Charmin or Scott, Please?
Trip to London, nope
The high school musical, nope
First time to prom, nope
Zoom, zoom happy hour
One drink tastes good going down
Two, three even more
History and background of Haiku poetry
Using humor to cope with stress
How nature can restore your health
Ways to maintain your creativity and mental health
Have you seen Beauty in Adversity too? Capture what that means to you in a photograph and send it to us to share on this page. Do you love to compose haiku poetry? All photos and haikus must be your own work, must be copyright free, and you agree that there will be no financial liability to Connecticut Hospice or its employees if your entry is displayed.
Send photos and haikus to Director of Arts Katherine Blossom at [email protected]
As a not-for-profit, we depend on generous donors to help us provide customized services and therapies that aren’t completely covered by Medicaid, Medicare, or private insurance.
Please make a gift to help us sustain the highest standard of care.
Admissions may be scheduled seven days a week.
Call our Centralized Intake Department: (203) 315-7540.
