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The Ways That the Medicare Hospice Benefit (MHB) Needs to Be Changed

Covering Acute Treatment Instead of End of Life Care

Around the country, in all types of health care, there’s a not-so-hidden secret:  We, as a society, are not doing our best for those at the end of life.  We are starving the palliative, home care, and hospice fields, in order to spend more on acute hospitals, medications, and procedures.  The result is that Americans are now living longer than they used to, but have stopped increasing their years of “good quality” living.  More and more of them live with pain, disability, chronic conditions, and limitations on daily activities.  

Better End-Of-Life Decision Guidance

It isn’t so hard to figure out how we could improve the situation, but our systems are not set up to assist patients in making decisions about types of care, living situations, and end of life wishes.  Although almost everyone questioned in surveys says that they don’t want to die connected to tubes and machines in a hospital bed, that has become increasingly common.  Not only is it hard to have discussions about hospice care at the bedside, but it is actually almost always easier to get coverage for an emergency room visit and a hospitalization, than it is to be approved for inpatient hospice care.

Doctor in hall approaching female waiting patient

Stop the Cycle of Acute Episodes, ER Visits, and Rehab

Hospital stays and rehab stints drain patients, and they often come out with diminished energy and capacity, yet the next episode turns out to be much the same.  In today’s busy health care world, an ED visit can lead to 24 or 48 hours on a gurney in a hallway, never a prescription for optimal treatment.  In fact, hospitals have to admit patients after a certain number of hours in the ED, regardless of bed availability or final disposition.  

Revisiting the Purpose and Termsof the Medicare Hospice Benefit

How can we stop this vicious cycle?  We need to revisit the purpose and terms of the Medicare Hospice Benefit (MHB), passed by Congress almost exactly 40 years ago, with significant input and involvement of our Connecticut Hospice, the country’s first hospice.  At that time, there was no coverage for inpatient stays, and the MHB was viewed as a major step forward.  While that’s true, many of the criteria used at the time were randomly chosen, and need to be looked at in light of today’s realities. 

Light bulb

Removing “Hospice” From the MHB Name

Let’s begin with the name.  Most of us in the field would like to see another moniker, perhaps the Advanced Illness Benefit.  The word “hospice” tends to frighten people, including relatives, and they can delay choosing it until too late in an illness, just for that reason.  Advanced Illness would convey that someone might be ready for palliative care and symptom management, instead of curative treatment, but without the finality that hospice implies.  

Including Coverage for Palliative Care

It would also encompass palliative care, which is often left out of the picture entirely.  Physicians have long known the benefits of treatments that reduce pain and suffering.  Take, for example, radiation for bone cancer.  That is prescribed to alleviate pain, not to cure the cancer, and it is a well-established course of treatment.  However, palliative care is not always covered by commercial insurance companies, and is compensated minimally by Medicare.  

Hospice and Palliative on chalkboard held by doctor

Studies have shown repeatedly that, in many instances, palliative or hospice care can lengthen someone’s life just as much as an operation or chemo, yet is not always offered as a choice, as it is in short supply, plus it is a money loser for every hospice in the country.  We can only afford to do so much of it, because our reimbursement does not begin to cover the cost, and is especially not keeping up with the recent rise in nursing salaries.  

Changing the Six-Month Prognosis Limit

We should also look again at the six-month limit used in the MHB.  While that is not a final upper limit—it just means that, without treatment, the person’s illness is likely to run its course within six months—it does tend to make people wait too long to enter supportive care.  While many people are recertified, and do stay in our care for multiple certification periods, the six-month criterion sounds like a true end-stage development, whereas patients who enter supportive care sooner can live fuller, richer lives for far longer than those who do not.

Changing General Inpatient Eligibility

The definition of General Inpatient (GIP) eligibility is neither clear nor consistent.  We are allowed to keep patients in an inpatient setting if “care in any other setting is not feasible”.  That’s subjective, and overlooks the fact that many patients come to our inpatient unit because they don’t need an acute-care hospital bed, but they are too sick for a skilled nursing facility or a home setting.  It would seem that those people would fit into the definition above, but here’s the catch:  Our goal is to make them comfortable, by adjusting medications and providing skilled care.  However, once they are deemed “comfortable”, they become ineligible to stay, even if they are taking twenty doses of medications in a day.  Translated, that means that, once we are doing our job, we are out of a job.  Needless to say, that isn’t an easy message to convey to grieving families.  

Expanding Coverage for Therapies, Treatments, and Medications

There are other items in the MHB with which we might quibble, such as which therapies, treatments, and medications should be covered, but a complete overhaul is really necessary to address the issues above.  If we do not, we are guaranteed to continue spiraling upward in our healthcare costs as a nation.  As our population ages, they will need more and more skilled care.  If we go on paying for procedures and even experimental treatments, but not for basic symptom management, we will be driving people toward expensive plans of care that won’t work, and that they may not even want. 

Overhauling the 40-Year-Old Criteria

Forty years is a long time.  Just as the boundaries of neonatal potential have grown, so too have our abilities to prolong the other end of life.  We don’t always provide the quality of that life along with the treatment.  When we do surveys, most of those answering say that they want to die with dignity, with their faculties, and not in pain.  Why can’t we all commit to a system which will allow hospitals, hospices, and home care agencies to provide exactly that?  We know that it will cost less than what we are doing now, and we know that the end of life can be better for many.  

How to Effect Change in End-Of-Life Care

Secure a Living Will, and a Health Care Agent

What can you do about this problem?  First of all, put your own house in order.  Make sure that you have a living will, and a health care agent.  Discuss your wishes with your loved ones.  Write down anything that you think might be forgotten in an emergency.  Carry those documents with you, if you think there might be any need for them, or, better yet, have them entered into your electronic medical record. 

Living Will Document

Advocate for a Medicare Hospice Benefit Overhaul

However, there is another stage of action, and that involves the national scene.  Write or call your Congressperson and Senators, and advocate for a major overhaul of the Medicare Hospice Benefit.  All you need to know, in order to find this important, is that half of the Cares Act money during COVID that was meant for hospice care was earmarked for increased fraud investigation in the industry.  While every field has some misspent money, the vast majority of end of life providers are trying, with increasing difficulty, to find a way to help our citizens to spend their final days in comfort and peace.  We often joke that no one lies to get into a hospice, but the underlying point is clear:  We provide a vital service to the most vulnerable among us, and we fulfill a huge need in our society.  Please help us help you.

Patient in hospital bed outside Connecticut Hospice visiting miniature horses
Housekeeping Tools Cart

The Nurturing Culture at Connecticut Hospice Fosters Happy and Loyal Employees

Wanda Young is the Housekeeping Supervisor at The Connecticut Hospice.  She has been in the job for four years, and she plans to stay—forever!  Her feelings about the facility are clear:  She finds the setting beautiful, and the nurses very caring.

Wanda Young - Housekeeping Supervisor at Connecticut Hospice
Wanda Young - Housekeeping Supervisor at Connecticut Hospice

All the Staff Roles at Connecticut Hospice Are Integral to Quality of Care

Although she has worked in other places, including in other healthcare organizations, Wanda finds Connecticut Hospice to be somewhere special.  She thinks the nurses and CNAs go above and beyond to make the patients comfortable and to bring them whatever they need, whenever they need it.  While workers in other places “work for a paycheck”, here she sees them “work because they care”.  

Hospice Staff Find Fulfillment in Their Work

When people ask her about where she works, she tells them that it can be a “sad place”, but also a loving one.  She connects most strongly with those who don’t have anyone to take care of them and do not have visitors.  If she is working overtime on an evening shift, she may sit by the bed of one who falls into that category, especially someone with dementia.  If she can be that visitor for a lonely patient, that makes her feel fulfilled.

Much has been written lately about housekeepers in healthcare institutions during COVID, including that they feel unappreciated and left behind when the medical staff is thanked and praised.  That’s not true at Connecticut Hospice!  Wanda is a vital part of whatever goes on.  She comes to retirement parties, stops by offices to make sure that the rest of the cleaning staff has performed up to standards, and has a comment for every visitor and staff person alike.  She wears her bright blue scrubs with pride, and you can’t miss her—and she won’t miss you.  Her opinion on most things is widely known and passed around.

Housekeeping staff member raking leaves

All Staff Roles at Connecticut Hospice Are Integral to Quality of Care

Looking at housekeeping and maintenance helps people to understand all the components that go into providing world-class end of life care.  Making sure that someone has a clean and calming environment is all part of what is provided.  The IDT, or Interdisciplinary Team, is often referred to as the heart of hospice.  Members of the clinical staff meet every week or two, to discuss the various factors of the patient’s condition, medications, and emotional status.  Adjustments are made to the plan of care, based on what the group decides.  

Wanda’s comments make it clear that it is not just the clinical team that contributes to the well-being of patients and families.  Everyone works together, from dietary to maintenance, billing to social work, and marketing to human resources.  The IDT philosophy, and the mission of hospice, leads everyone to coordinate and add their own special talents to the mix. 

Connecticut Hospice Staff Grow in Empathy Through Their Work

When asked about how working in a hospice has changed her, Wanda thinks for a moment.  “I care more about people.  I don’t just look at them; I really see them.  This is an awesome job.”  She has told her children, “If I get sick, don’t take me to your house.  Take me to Connecticut Hospice.”

Wanda, and her co-workers are just one of the departments that help to make The Connecticut Hospice such a special place.  It is more a calling than a job, and it is a privilege to serve the families, visitors, and patients that are all around.   Making them more comfortable makes Wanda happy.  And when Wanda is happy, we are all a little happier!

Housekeeping Team at CT Hospice
Male Housekeeping Employee
Social worker speaking with hospice family

Understanding the Aspects of Social Work Services in Hospice Care

Hospice programs are required to provide social work services as a “Condition of Participation” for the Medicare Hospice benefit, but many families do not realize the extensive components offered.

Some Families Resist Social Work Services

In fact, it can sometimes be difficult for social workers to get into homes to see families, where home hospice care is being given.  Although there can be feelings of wanting to withdraw from outside interventions or visits, more often it is because people do not fully grasp the wide breadth of what hospice social work offers.

What Does a Hospice Social Worker Do?

Initial Assessment Evaluates Status, Needs, and Goals

The first standard of hospice social work is to do what is called an initial assessment.  It provides an early glimpse of where the patient and his or her loved ones are, in terms of their understanding of the illness and its progression, preparation for decisions that may need to be made, and where they are in the grief process. 

It is not uncommon for families to express their feelings that they have no need for any such help, and to see taking any advice or counsel as somehow being a sign of dysfunction, or an inability to care for their loved one properly.  

Ease Practical End-of-Life Burdens

Social workers go far beyond what that would imply, about being there to fill in where a family cannot cope.  Although that can be true, a more useful way to think about their services is to compare them to a compassionate and expert event planner.  Death has its own set of rituals, red tape, financial considerations, and especially emotional ramifications.  Sitting with someone who does this for a living can not only bring comfort and clarity, but can ease many practical burdens that arise with sometimes overwhelming speed, as health declines.

Hospice Social Workers Help Establish Goals of Care

One important early conversation, with the patient if he/she is able, or otherwise with the family or friends, is about the goals of care.  

Examples of Questions About Hospice Care Goals:

Examples of Last Wish Fulfillment at Connecticut Hospice

Family Wedding at Our Facility

That last question leads to what is perhaps the most joyous part of a social worker’s job.  Maybe there is an upcoming marriage that can be accelerated.  Social workers have planned weddings, both for patients and for their children and grandchildren, sometimes even in our inpatient facility or on its waterfront grounds.  One family wanted a Disney-themed wedding, to commemorate a family trip, and the social work staff decorated the room, while the arts staff brushed up on Disney tunes to play at the bedside.  A beaming bride had mouse ears on, to complement her wedding dress. 

Hospice family holds wedding

Birthday Parties and Anniversary Celebrations

Other ceremonies have taken place with regularity, such as birthday parties or anniversary celebrations.  

Connecticut Hospice Patient has a surprise princess birthday party
Man holding Happy Anniversary sign

Graduations

One of the most poignant was a graduation, where the professors came in academic garb, to present the patient with her recently earned diploma. In all of these cases, the social work staff works with the family to achieve those goals.

Professor holds graduation ceremony at Connecticut Hospice Facility

Saying Goodbye

Goodbyes of all kinds also fall into hospice social workers' purview.  Dealing with children’s grief, and the preferences of the patient and other relatives can be a difficult, but rewarding task.  There may be times when patients need transportation by ambulance, in order to say those farewells to a person or place, and social workers can make that happen.  When the hospice care is not in the home, there can be arrangements made for pets to be present.  Even a horse came to our backyard, so that its owner could see it one last time.

Hospice Patient-saying goodbye to dog
Horse visits patient at Connecticut Hospice

Last wishes can range from a favorite food to a video to leave behind, from putting toes in the ocean at the end of life to finishing a last book or article.  Whatever closure means becomes the social worker’s goal to facilitate.

Hospice patient traveling to say last goodbye

Planning a Memorial Service or Funeral

Planning a memorial service or funeral falls into the category of last wishes, as well as deciding about DNR/DNI or treatment choices.  Even broaching those subjects with family members can be something in which the social worker participates, especially when some relatives have not understood or accepted the disease trajectory.  

Hospice Legacy stone with name and year of death

Other Ways That Hospice Social Workers Support Patients and Families

Explaining Financial Considerations

Financial considerations, including Title XIX applications, can be explained by social workers.  They also do discharge planning when people can no longer live independently, and can help to narrow the options and help with the choice of a nursing home, should that be necessary.  They are charged with making sure that the patient is safe in whatever environment is chosen.

Provide Support to Patients With No Family

When there are no relatives, a social worker can even take over some of the role that a family member would otherwise play.  They can reach out to people that the patient wants to see, help with household tasks, or just keep someone company.  One often-made comment about the end of life is that the days may be short, but the minutes and hours can be long.  Having someone objective with whom to talk can be so important.  

Social Workers Are Vital to Hospice Care

By now it is clear that social workers fill a vital role in many aspects of hospice care, no matter the setting of that care.  They are special people, and they bring a combination of practicality and compassion that is so necessary for both patients and families.  Whether they are serving as coordinators or counselors, they can play a part in every patient’s journey.  Developing a relationship with them early in the process can make a difference all along the way.  If there is a question of any kind, and the social worker doesn’t know the answer, he or she probably knows how to help get that answer. 

Most of us know social workers in some setting, because they are so versatile in their career choices.  What they do varies tremendously by location, so a school social worker or a prison social worker may do very diverse jobs.  It is hard to imagine, however, that anyone could have a position that is more fluid that that of a hospice social worker.  They are truly indispensable.  

No Admittance Sign

Why Isn’t My Loved One Eligible for Inpatient Hospice?

Of all the questions we get asked by families calling our Admissions Office at The Connecticut Hospice, this is the most common one, and one of the hardest to answer.  The very short answer is that Medicare is calling the shots for hospice providers.

Medicare Dictates Inpatient Hospice Eligibility

There are many rules that govern hospice care and hospice eligibility.  Some people, who are not primarily covered by Medicaid or Medicare, have insurance plans with gatekeepers, who dictate whether someone can have their stay in our inpatient unit covered by their insurance plan, and for how long.  This is mostly for those under 65, and, while companies and plans vary, such admissions are generally approved.  At least one large employer in our region has a lifetime limit on hospice care of all kinds, but that type of restriction is rare.  

Almost 95% of our patients on our home care or inpatient service are covered by either Medicare or Medicare.  Those rules are set by the Centers for Medicare & Medicaid Services (CMS), which is part of the United States Department of Health and Human Services (HHS), the Federal department that governs, among other things, Medicare reimbursement.  Connecticut Hospice was the first provider in the country to be reimbursed by Medicare for hospice care, and that bill was passed in 1983.  It is updated annually as to rates, and there are sometimes changes in the rules, or new interpretations of those rules.

Medicare Criterion: Life Expectancy Within Six Months

Recently, these interpretations have focused on fraud, with half of the CARES Act money during COVID going toward more investigators, to make sure that people are not being covered for hospice care if they are not entitled to it.  While the standard is not black and white, the most commonly cited dictum is that the patient’s primary diagnosis, if left untreated, would likely result in death within six months.  This is invoked so often that it is shocking to note that the period of time—six months—was chosen arbitrarily at the time the original bill was enacted.  While there has been much encouragement from the industry to make that period 12 or even 24 months, that has not yet happened.  

Medicare Criterion: Outpatient Treatment Isn’t Feasible

Once the patient’s eligibility for hospice care has been established, there is a further requirement for inpatient care to be allowed.  The rule is that the patient cannot be feasibly treated in another setting.  Clearly, that is a definition that cannot be applied without using some medical judgment.  Symptom management must be required at a level which cannot be sustained in the home or in a skilled nursing facility.  Generally, this would refer to breakthrough pain, extreme agitation, or the need for frequent adjustments in medication with an onsite pharmacy.  

Pain at High Meter

Not Medicare Criteria: Dying Prognosis or Discomfort

The most shocking part of the above definition is that nowhere does it refer to the patient’s prognosis.  Dying is not, by itself, a criterion for inpatient hospice care.  “Comfrtable” is not a condition that, while all hospices strive to achieve it, is acceptable in an inpatient setting, except with respite care.

Respite care is allowed by Medicare for no more than five days during each certification period (60 or 90 days).  Patients can come to an inpatient facility for pain management or caregiver breakdown (again, not a term that has an unambiguous definition).   

Respite last arrow

Non-hospice Patients May Be Covered for Inpatient Symptom Management

Sometimes, non-hospice patients can also be brought to an inpatient unit for symptom management, on a Diagnostic Related Group (DRG) basis.  That can only happen at Connecticut Hospice because we are separately licensed as an acute care specialty hospital, in addition to being licensed as an inpatient hospice and as a home hospice.  That would be a limited stay to address issues or adjust medications, with the idea that the patient could then return home.  Since those patients are not enrolled in hospice, they don’t need to qualify in any particular way for CMS, but they do need to require symptom management.

Medicare Coverage Rules can Seem Arbitrary and Unfair

It is certainly understandable that patients and their families would find all these rules confusing, and perhaps unfair.  Each family has its own understanding of what care at home entails, and differing capacities for providing it.  What constitutes an acceptable level of home care by the family, according to Medicare, can include up to 18 injections per day of medication.  Even when a caregiver can provide that level of support, the strain of not sleeping, especially if the patient is agitated and restless, can be extremely wearing.  When they call about an inpatient bed, and are told that their loved one is not inpatient eligible, that can be very upsetting to hear.  

Unfortunately, we have the beds to take those patients, but not the ability to get paid the inpatient rate for them.  Occasionally, and more often during COVID, families whose loved one qualifies for home (routine) hospice care may choose to bring them into our inpatient facility, and privately pay the difference between what Medicare will pay for home care, and what it pays for inpatient care.  

We are incredibly sympathetic to those who find this onerous, and totally understand that it is not a choice that every family can afford to make.  The entire industry is lobbying for a better, fairer, and more comprehensive approach to end-of-life care in this country.  As the baby boomers age, our collective system for caring for those with terminal illnesses will be stressed to the breaking point.  Some cultures deal with this issue differently, but, in our increasingly global culture, not everyone will live close enough to their elders for family care to work.

Effect Change By Speaking Up

It sounds like a bad joke to tell people to “write to their Congressional representatives”, but that is the only way things will change.  In the meantime, Medicare and Medicaid will continue to dictate the amount of care it will provide, and the amount they will pay providers to give it.  When they audit hospice providers, which they are doing on an alarmingly increasing basis, they can unilaterally decide that someone didn’t need to be in inpatient hospice care, or in hospice care at all.  At that point, they withdraw the money for that patient from our account with them, and we can either accept that, or go to an Administrative Law Judge to appeal the ruling.  That process takes up to five years, during which we do not have the use of the money, even if we win it back in the end.  Some hospices have simply shut their doors in these circumstances, since they are spending their time in litigation rather than in patient care.  

Why We Have to Turn Some Patients Away

All of this is a very long answer to the simple question of why we say no to so many patient families who inquire about inpatient care.  While we would love to provide it, we cannot do so, if it means that we will be doing it for free.  Therefore, we have to apply the same lens that the government uses when evaluating a patient, and that causes us to turn down many people we would otherwise admit.  

So, if you are calling us about an admission, you and your doctor must be prepared to meet the standard that our inpatient facility is the only feasible place to treat the patient’s pain and symptoms.  All of us know that we are experts in providing the best in end-of-life care, but we are not the ones deciding when we are allowed to do that.  If privately paying the difference is an option for your family, we are happy to discuss that avenue, but we are not trying to push people toward that alternative.  In a perfect world, we would take all comers, and care for them with our customary competence and compassion.  Until such a system exists, we will care for all those whom we are approved to take on an inpatient basis, and offer home hospice care to the others, if they qualify for that service.  

We hope you understand that we are sympathetic to your needs, and are doing our best to accommodate all the patients we can.  

A Guide for Hospice Patients and Their Loved Ones

Connecticut Hospice Statue of Hope Overlooking the Shore

Much has been written about the best time to enlist hospice care, and there are certainly many medical and personal decisions to make.  Since we see patients and families deal over and over with the same issues, we thought it might be useful to provide an overview of what they consider at such an emotional time.  While the priorities may differ from person to person, a framework can help, especially at a time when it may be difficult to think calmly and concisely. 

Be Open to Changes in Medical Directives as Illness Progresses

Since hospice care is very patient-centered, we should begin with the patient’s wishes. 

Sometimes he or she is no longer able to verbalize desires, and sometimes those choices may change.  For example, a wise doctor once gave a talk that can basically be summarized by stating that, when facing the possibility of death, most people choose life.  That means that compromises in mobility, independence, and comfort, that may previously be rejected on principle, may be tolerated and even chosen, as illness progresses.  Therefore, stated directives about health care choices may go out the window.  If the patient is not competent, it becomes harder, and what he/she said at some earlier time may still be honored.  

It is often true, as the end of life unfolds, that there are dips in ability followed by plateaus before another event takes the patient to a lesser state of functioning once again, which can be followed by a second plateau.  This can go on for days, months, or years.  The patient is often unhappy at the outset, but can become inured to the lesser capability, and even accepting.  Someone who refused a walker or wheelchair, for instance, may use one when there is no practical alternative. 

How to Make Decisions About Continuing Treatment 

When speaking with the patient’s physician, the issue of further treatment can arise, and it can be hard to hear the real answer being given.  Often, the easiest question for the doctor to answer, and the easiest to interpret, can be this:  What would you do, if this were your parent, your spouse, or your child?  Put that way, he/she is not being asked what to do, what is possible, or what the correct choice is.  It is simply one person trying to judge the alternatives, based on what others might have chosen in similar circumstances.  Asking about specific procedures is often better to frame in a statistical way, to avoid misunderstandings:  What are the chances that this will work?  What percentage of people get a meaningful extension of life from this?

Doctor holding hands of male patient

Understanding Patient Wishes and Standards for Living

Once the medical side of the equation has been addressed, it is time to move onto preferences and feelings. The most basic question, then, to answer is this:  What are your acceptable standards for living?  This covers many things, from feeding tubes to mental capacity to chemotherapy.  It is up to the patient to decide, whenever possible, how he or she wishes to proceed.  Many choose to be DNR/DNI. (N.B.  Although our inpatient facility takes admissions of those who wish to be resuscitated or intubated, we ourselves aren’t trained in those procedures, so call 911 like everyone else.)  Others decide to forego further treatment, especially if it is painful or not working.  Some even refuse food, particularly when the will to live has gone.  Our job, not unlike that of family members, is to honor the patient’s wishes to the best extent possible.  We strive to make someone comfortable and peaceful, and do not assume that we know what that means for any specific person.

Address Unfinished Business

That brings up the second question:  Do you have any unfinished business, or last wishes? We hear so often about the proverbial bucket list, and many of us are busily checking things off that list now.  However, there comes a point at which it seems not possible to fulfill further wishes.  However, whenever possible, we as staff try to make those dreams a reality.  That’s why we have weddings at Connecticut Hospice, either of patients, or of family members.  

Fulfill Final Requests

Sometimes, the request is to feel the ocean water on their toes one more time.  In one such case, a social worker brought the patient’s bed to the water’s edge, and dumped buckets of water on his feet.  He passed away within a couple of hours, a happy man.  Going home one last time can be important, especially if there have been prolonged hospital or nursing home stays.  That has been arranged for some people.  Saying goodbye can mean seeing a beloved pet, and we have had them at Connecticut Hospice—most notably, a horse on the back lawn. 

Horse standing at hospital bed outside overlooking water at Connecticut Hospice
Wedding outside with patient watching

Offer/Receive Emotional Closure

Usually, the last wishes center around emotions, and forgiving or being forgiven.  

We often tell families that it is important to say three things: I love you; I forgive you; and we will be ok if you leave us.  So many people end up regretting that they stopped their loved one from talking about death, which can be an important part of the dying process.  Letting him or her express final emotions can be very satisfying for them, and for the listener as well.  Peace means many things to many people, but often it comes from letting negative emotions go, or apologizing or reconciling with someone.  Helping that happen begins with asking the patient about closure.  

Make Final Arrangements

If there is time, and desire, questions about funerals, burial or cremation, wills, or property may arise.  

Again, it is hard, but important, to resist changing the subject, or saying that there is plenty of time to discuss things later.  The patient knows his or her timetable best of all, and it can be a great comfort to settle some practicalities.  Not infrequently, patients choose lesser levels of medication, even when it means more pain, in order to keep a clear mental status.  Often that is for the purpose of having such discussions.  They can even be prompted with your own question:  Is there anything you want to tell me?

Female hands holding elder hand of patient in bed

Allow the Patient to Discuss Their Death

For the many people who find this all difficult, they should realize that they are performing a great service is allowing tough questions to be answered.  Providing someone with the gift of being heard is something you can do for him or her, when there is little else you can do.  Even prompting memories allows the patient to realize that he or she will not be forgotten—a basic human desire, and one we are all likely to fulfill.  Creating memories at the bedside can enrich those final days, and leave those mourning with smiles, even through tears.

Sons on either side of male hospice patient in bed

Connecticut Hospice has always been an institution that honors final wishes, choices, and requests.  We are grateful to be able to provide patients and families with the comfort that brings, and a privilege to have shared those moments with so many through the decades we have served our communities.

Patients in hospital beds outside watching singers
Man holding Happy Anniversary sign
Symbol of Hope sculpture at Connecticut Hospice with rainbow over Long Island Sound in background

The Connecticut Hospice Chaplain Supports Patients Through Their End-Of-Life Journey

One of the members of the Hospice team is a chaplain who interacts with other team members in providing total care to our patients who are facing end-of-life issues. In the context of hospice care, spiritual issues and/or spirituality is not confined to one singular religious experience. The chaplain has a broad knowledge of many world religions and is sensitive to their understanding of how these challenges intermesh with the patient’s faith journey at this point in time.

Spirituality may not include an organized faith journey for some of our hospice patients. A sense of meaning in their place in the world in relation to nature, humanity, and a sense purpose all come together in a form of recognized spirituality. The Connecticut Hospice chaplain is here to listen and accompany the patient through this journey.

Hands meeting at sunrise

Comprehensive Plans of Care

Spiritual Care is an important component of the comprehensive care plans at Connecticut Hospice. The Hospice Chaplain sits and listens firstly to the patient and hears what they perceive as what is occurring to them. They may express fear, have an unknown feeling of uneasiness, or lack acceptance of the concept of end of life. The chaplain hears the many concerns and transforms these issues into a plan of care. This plan is utilized to help the patient address their issues and to be comforted in the end-of-life process. As chaplain and patient progress in their relationship, adjustments may be made to further a compassionate plan of care that is individually designed to each person’s perceived needs.

The Hospice Chaplain Is a Trained Medical-Spiritual Professional

This process includes family and friends who can give insight that the patient, because of illness, is not able to remember. The chaplain is also present for family members who struggle at this time of perceived loss. There are so many emotions present: anticipatory grief, anger, depression, and guilt. They begin to manifest themselves in many diverse ways. The chaplain, who is a trained medical-spiritual professional, can address these issues as they arise in the patient and with family members. The Chaplain, as a member of a highly trained team, receives observations from the social worker, nurse, doctor, and team directors that prompts changes to the plan of care to be sensitive to comfort and compassionate care.

A healthy spiritual outlook connects to an overall sense of well-being. This can affect the management of pain, producing a higher level of mental physical comfort. The main hospice goal is always comfort. The chaplain aids in accomplishing that objective. 

Family sharing during a group session

Hospice Chaplains Support People With Their Faith, Regardless of What It Is

Chaplains understand the intimate relationship patients have with religion, spirituality and the nature of earthly existence and, specifically, different ethnic cultures. They have spent many hours studying cultures and how they affect each and every being. Even though the family and patient may heavily rely on local clergy, the chaplain is critical in providing ongoing presence and developing a friendship that brings comfort and assurance to all concerned.  When the family has its own clergy or spiritual guide, the Hospice Chaplain can assist in notifying that person, and arranging a visit.  This specific attention from a pastor is different from the broad spectrum of what spiritual care can encompass.

Looking once again at families, as time progresses and their loved one’s illness progresses, new emotions and expressions among family members emerge. A weekly call from the chaplain can be very beneficial to the family, just knowing someone else cares, someone else understands, someone else knows how they feel. 

The Chaplain may suggest reading material that can guide them in their emotions. Sometimes there is a specialized plan for children in what maybe a first-time experience with end-of-life issues. The chaplain is prepared to gently explain what is happening to grandma and to compassionately listen to and answer their questions.

Hospice chaplians suggest reading materials

No One Dies Alone at Connecticut Hospice

As time progresses, we continue to honor the hospice philosophy that no one should approach death alone. As a critical part of the team, the chaplain is present, if applicable, to once again inform the local clergy, if desired by the patient or family.  He or she will be invited to join in with the team in aiding the patient to transition comfortably. The Chaplain, who has at this point developed a relationship with the family, has become a trusted member of the patient’s circle. The chaplain knows the patient’s needs and can help by expressing them at this crucial moment. Again, no one dies alone. Family members will be called and informed that death is near and the chaplain will be present as a guide. 

Chaplain at bedside with family

The Hospice Chaplain Supports the Family Through Death and Into Bereavement

Family members may need counseling or compassionate listening at this time. The chaplain can find a neutral place to allow family members to express their feelings and needs. When death occurs, the family can gather with the chaplain for prayer and blessing.

The journey can continue with the family with helping in appropriate funeral planning in keeping with cultural, religious, and spiritual understanding of each unique family situation. In the weeks ahead the chaplain and a specialized bereavement team member will check in with the family.

Sometimes we are asked to give prayers, or even facilitate a service for the family and friends of the loved one.  Then, along with the social workers, we usually turn to the Bereavement Director, who steps in after death, for the thirteen months of grief counselling formally provided.  While time limits are fluid, the year or so of formal groups or sessions is seen as a benchmark by Medicare, that accommodates most survivors in that setting.

Flowers from a Memorial Service at The Connecticut Hospice

Our Pastoral Care Professional Team

Currently, Connecticut Hospice has a team of three pastoral care professionals, along with six social workers and a Bereavement Director.  In addition, we have many volunteers, who participate from the time of admission, through the transition itself—especially when family members are not able to be present—and afterward, to assist in many ways.  Many of them have suffered similar losses, and this is their way of giving back what hospice care provided to them in their time of need. Every team member offers a unique and highly specialized view towards hospice care. The chaplain is one of the team that aids all concerned to a compassionate, informed journey through the end of life.

Clouds across blue sky above double beach in Branford, CT

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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. 

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Contact Admissions

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

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