It’s no secret that being a caregiver is a large undertaking. According to the National Alliance for Caregiving and AARP, family caregivers spend an average of 24.4 hours per week providing care. In today’s world, many of us are more transparent about our mental health. Therefore, it’s not uncommon to hear about the mental strain a family caregiver may be experiencing. Feelings of guilt, exhaustion, frustration, and anxiety are all common when taking on the role of a caregiver and can make an already challenging time harder.

Signs & Symptoms of Caregiver Guilt

• Detachment– A feeling of going through the motions, knowing you have duties, completing them, but feeling no connection.
• Role Confusion– The lines of a relationship between a caregiver and a dependent can become blurred. You may start to feel like you are no longer a spouse, partner, child, or friend. This may lead to anger.
• Helplessness– Even after all you do, it doesn’t feel like you’re making a difference. It’s important to remember in the face of terminal illness, things may not get better. Your role may solely be to provide comfort.
• Depression– On top of the balancing act you may be doing, you are facing potential loss and may already be experiencing grief for the person you’re caring for.

In short, it’s important to remember that these signs and symptoms, among others, are common. Despite our best efforts, life changes when you assume the caregiver role. Change alone can be a driver of our emotions and well-being.

Combating Caregiving Guilt & Burnout

It’s easy to forget about or not see the priority in self care. However, it is best to be honest with ourselves about this. Pouring from an empty cup will impact your ability to be a present and helpful caregiver. You deserve an hour or two of good in each day. In other words, what makes you happy in life? This can be a time to read, go to the gym, or watch your favorite reality show. These brain breaks are just as good for your mental health as eating or sleeping. So, self-care is something you must block out in your calendar. Whatever it is, you deserve it, and those you’re caring for will understand.

Self-care also involves taking care of your health. Think of it this way: if you want to give the best care possible, it starts with you! Proper sleep, eating healthy, and getting fresh air are all elements of a happy life. As aforementioned, caregiving may take a toll on our physical health, but also our mental health. Consider talking to a therapist or clergy member about your caregiver experience. Additionally, ask someone to be your go-to. When you’re feeling overwhelmed have a designated friend or family member to lend a listening ear.

Try one of these things, if you feel a bit overwhelmed with your caregiver role.

• Consider buying into a meal delivery service.
  • Save time planning meals, shopping, and cooking. Meal delivery services bring this right to your door, and you’re in control of your order.
• Start your morning with fresh air.
  • Whether it’s a walk or eating breakfast outside you’re sure to feel refreshed.
• Keep a journal to track your anxiety triggers.
  • Grab a journal and write about your day and when you felt overwhelmed. This can help you find patterns so you can better avoid triggers. You can also find many prompt ideas online.
• Download The Mindfulness App and end the day with a meditation session to wind down.
• Create a “Positivity Playlist” with all your favorite songs.
• 10 Minute Declutter
  • Set a timer for 10 minutes, turn on some music, and pick up some clutter around the house. The difference a slightly more organized space can make will amaze you.

As illnesses progress, be realistic about care. Although it may not feel like it, there’s power in admitting you can’t do it all. This shows your intent to be a helpful caregiver. Respite services can be provided in-home to help give you a much-deserved break. Additionally, it’s important to prioritize conversations with the dependent party’s physician on when hospice or palliative care might be needed. In conclusion, keep in mind that opting for hospice care can be emotional; however, it should not be looked at as “giving up”. Hospice of Southern Illinois offers a team approach to care that makes sure your loved one’s end-of-life journey is comfortable and dignified.

Mental Health Resources

• Psychology Today Illinois Therapy Directory
  • BetterHelp
  • Headspace App
  • Calm App
  • Worry Watch App

Local Caregiver Resources

Are you a caregiver local to the MetroEast? If so, you can find support through AgeSmart! Get access to all things from caregiver support groups to educational resources to safety. Additionally, for those local to Southern Illinois, check out the Egyptian Area Agency on Aging for access to homecare programs, day services, counseling, and more.

Resources

Alliance, F. C. (n.d.). Caregiver statistics: Demographics. Caregiver Statistics: Demographics . https://www.caregiver.org/resource/caregiver-statistics-demographics/

Jacobs, B. J. (2022, August 23). Caregivers: Living With Guilt. AARP. https://www.aarp.org/caregiving/life-balance/info-2017/living-with-guilt-bjj.html

MSW, I. W. (2020, December 18). Caregiver guilt: Causes, getting help & ways to cope. Choosing Therapy. https://www.choosingtherapy.com/caregiver-guilt/#:~:text=Signs%20%26%20Symptoms%20of%20Caregiver%20Guilt,-There%20are%20a&text=The%20common%20signs%20and%20symptoms,not%20wanting%20to%20do%20it.&text=Resentment%3A%20feeling%20unappreciated%20for%20the,help%20and%20not%20getting%20it.

By Ellen Middendorf, MD- Medical Director of Hospice of Southern Illinois

General Inpatient Care, commonly referred to as GIP, is one of the four levels of available hospice care. As the name implies, this is hospice care provided to a patient in an inpatient setting. CMS allows this care to be provided only in a Medicare-certified hospice inpatient unit or facility, a Medicare-certified hospital, or a Medicare-certified skilled nursing facility, though the latter is less common. The hospice works with the inpatient medical team to coordinate services and manage symptoms. The caveat for this level of care is that it is defined as short-term care provided for a patient’s pain management or acute symptom control that cannot be managed in other settings. Therefore, GIP-level care may be provided at the end of an acute hospital stay. However, there must be a need for pain control and symptom management, which cannot be feasibly provided in the home setting at hospital discharge.

                The Hospice Medical Director, in collaboration with the Interdisciplinary Team (IDT), ultimately determines if the patient’s clinical condition warrants this level of care. As has been noted, this level of care is designed for short-term intervention. The length of stay is individualized to the needs of the patient. There is no set limit for the number of days that a patient can remain under GIP care, but there must be daily documentation supporting this higher level of care as longer length of stays may come under scrutiny from CMS. The IDT must develop a discharge plan for the patient, even at the time of hospice inpatient admission, should the level of inpatient care no longer be necessary.

                There is no specific disease, condition, or symptom that qualifies a patient to receive GIP care. The determinant is patient symptomatology.  The following list identifies some possible patient status triggers that may justify General Inpatient Hospice care:

• Pain or symptom crisis not managed by changes in treatment in the current setting or that requires frequent medication adjustment and monitoring.
• Frequent need for evaluation and re-assessment by a physician and/or nurse.
• Intractable nausea and vomiting.
• Advanced open wounds require frequent treatment changes and close monitoring.
• Unmanageable respiratory distress.
• Severe, agitated delirium or acute anxiety with behaviors, secondary to end-stage disease process requiring intensive intervention.
• Sudden decline necessitating intensive nursing intervention.
• Pathological fractures require medication adjustments for pain control and multiple caregivers for repositioning patients.

CMS also gives direction as to when the GIP level of care is not appropriate. The following list summarizes this guidance.

• Not appropriate for the sole indication of imminent death or inability to survive transfer.
• Not intended to address unsafe living conditions in the patient’s home.
• Not intended for caregiver respite or lack of caregiver altogether.
• Not allowable after symptom crisis has resolved.
• Not appropriate when the patient and/or family refuse to leave inpatient care.

In these situations, complications arise when balancing appropriate patient care and CMS guidance. Due to the complexity of this aspect of hospice care, the Office of the Inspector General (OIG) has recommended to CMS that increased scrutiny be placed on this level of billing. This has resulted in increased oversight of hospice GIP claims and increased surveyor efforts to ensure that hospices meet care planning requirements. At Hospice of Southern Illinois, we pride ourselves on the high ethical standards upheld by our organization. We will always strive to provide the best possible care to our patients and families, regardless of the location and setting, but we will also ensure that our organization is following CMS regulations and being contentious stewards of our reimbursement funding. Our Interdisciplinary Team will work diligently with you to walk this difficult path.

Resources:

Palmetto GBA General Inpatient Care webinar: Retrieved from https://event.on24.com/eventRegistration/console/EventConsoleApollo.jsp?&eventid=3850805&sessionid=1&username=&partnerref=&format=fhaudio&mobile=&flashsupportedmobiledevice=&helpcenter=&key=E46A8EB79EF7F80BFFFB40A236C4B9B2&newConsole=true&nxChe=true&newTabCon=true&consoleEarEventConsole=false&text_language_id=en&playerwidth=748&playerheight=526&eventuserid=561202654&contenttype=A&mediametricsessionid=485285290&mediametricid=5417892&usercd=561202654&mode=launch

NHPCO Compliance Tip Sheet: Managing General Inpatient Care for Symptom Management, Revised February 2022

As of May 11^th, 2023, the federal government lifted the COVID-19 PHE declaration. The COVID-19 pandemic has certainly been a challenging time for everyone. It’s hard to believe that it has been over three years since news reports first alerted us about cases of the novel coronavirus in the U.S. Since then, we have seen the disease spread everywhere, resulting in widespread shutdowns, restrictions, and changes to our daily lives. The declaration of a pandemic by the World Health Organization and a national emergency by the U.S. Government were significant events that marked the seriousness of the situation. The implementation of masking and spacing requirements, as well as limitations on visitation within health care systems, were necessary measures to slow the spread of the virus and protect vulnerable populations.

Like many times in the past 3 years, the end of the COVID-19 PHE declaration comes with policy changes for many healthcare organizations. The National Hospice and Palliative Care Organization has provided an End of PHE Quick Reference Guide for Hospices. Here at Hospice of Southern Illinois, our staff is working hard to stay up-to-date on these changes in order to continue providing quality care to our patients, families, and the communities we serve.

As we reach the end of the PHE, it is important to reflect on the progress made and the lessons learned. This milestone provides an opportunity to assess the strengths and weaknesses of our healthcare system and to identify areas for improvement. Let’s continue to work together to ensure that we are providing the best possible care for those in need.

By: Phyllis Gabbart, APN Nurse Practitioner for Hospice of Southern Illinois

Quality wound care in hospice is a challenge. As patients decline, the advanced disease can compromise the body’s largest organ – the skin. For individuals at the end of life, care of wounds is most often focused on supporting the individual for comfort rather than cure.  

What are the most common types of wounds in hospice care?

Pressure wounds are defined as localized injuries to the skin or underlying tissues, usually over a bony area, such as the hip or tailbone. In hospice care, these are the most common wounds. Multiple factors contribute to pressure wound formation in the terminally ill individual, but the overlying cause is skin failure. Skin failure occurs when underlying tissues become necrotic and die due to poor circulation. Additionally, skin failure may occur concurrently with other organ system failures. In patients with skin failure near the end of life, even the most vigilant care and treatment may not prevent skin breakdown.  Therefore, the goal in these situations is to manage pain and other distressing symptoms.  

Malignant fungating wounds occur when cancer infiltrates or metastasizes into the skin, blood vessels, or lymph vessels. For example, these wounds may occur in those with advanced breast cancer, head and neck cancer, or melanoma. Often, they are accompanied by symptoms of odor, pain, bleeding, and tissue necrosis (tissue death).  Due to their painful nature, comprehensive wound management is essential in these cases. Early identification of these wounds can provide relief from pain at the end of life.  

Skin tears are particularly common wounds in hospice care. As a result of friction or shearing, these traumatic wounds occur primarily on the extremities of older adults. These forces can cause the separation of the outer layer of skin (epidermis) from the middle layer of skin (dermis). Additionally, they may even extend into underlying structures to become full-thickness wounds. As a person ages, the skin loses elasticity, becomes thinner, and loses underlying fat cells. Skin tears can occur with minimal trauma due to the natural aging process of the skin.

Ulcers– Venous and arterial skin ulcers can occur as a result of poor circulation, usually in the lower extremities. These wounds often become chronic and unable to heal at end of life. Diabetic ulcers are wounds that occur mostly on the feet of diabetics.  These wounds are most commonly due to neuropathy and peripheral vascular disease.  As with venous and arterial ulcers, diabetic ulcers can become chronic and non-healing.   The goals for the treatment of these wounds are to manage symptoms to improve comfort, well-being, and quality of life. 

How does the hospice team help care for wounds?

As with all areas of hospice care, an interdisciplinary team approach is necessary for the management of wound care. Nurses perform a comprehensive assessment of skin on a routine basis, monitoring for the presence of new skin impairments as well as performing preventive interventions on areas at risk for breakdown.  Other team members such as home health aides thoroughly inspect the skin during bathing and normal hygiene care, communicating concerns to the nurses. Patient and family education is also important, not only for actual wound care but also for preventative care. Together, the patient and family will discuss the goals of care. A mutually agreed-upon plan of care is put in place and updated as needed. 

Can preventative methods help avoid wounds?

A complete and comprehensive assessment of the hospice patient is key to developing an effective preventive plan of care. The following are helpful in preventing skin breakdown:

• Risk assessment
• Providing meticulous skincare
• Good positioning
• Reducing friction and shear
• Using pressure-redistribution support surfaces
• Supporting nutrition and hydration
• Managing skin moisture

Despite best practices in preventive methods, some skin changes at the end of life may be unavoidable.  The focus turns to relieving suffering and providing the best quality of life for each individual to live with dignity, respect, and as much independence as possible.

By Ellen Middendorf, MD- Medical Director of Hospice of Southern Illinois

As the Medical Director at Hospice of Southern Illinois, I use the term “case manager” often in my day-to-day duties. It might be in terms of a request to have the case manager address a medication issue or the case manager follow up on an x-ray or laboratory result. However, I never spent much time considering what case management truly meant for our patients and their families. I just know that the system works, and it works well.  However, after a family member of mine suffered a very serious injury in December 2022, I quickly learned that not all compartments of health care delivery operate the same. Even as a physician, I have had multiple struggles navigating our healthcare and health insurance system to get my loved ones the care they need. The process, with all its frustration, made me truly realize the compassion and efficiency of case management.

In terms of CMS regulations, a hospice agency is required to designate a Registered Nurse to serve as a member of the Interdisciplinary Team. Your designated nurse may be referred to as a Case Manager or RN Coordinator. They are responsible for coordinating the implementation of the Plan of Care. Additionally, they may be responsible for offering direct nursing care to the patient and helping collaborate with the Interdisciplinary Team (IDT) for care delivery. CMS recognizes this role as vital as it ensures that care is quality and timely.¹

The Case Manager ensures that the Plan of Care remains updated, individualized, and relevant to the needs of the patient.¹ This ensures that our patient’s goals are met, and their families and caregivers receive the support they need. But what exactly does this look like in the day-to-day lives of our patients? The Case Manager assesses the patient as frequently as deemed necessary by the IDT. This may be anywhere from once a week to daily. During this assessment, he or she determines if the patient’s pain, or any other medical symptoms, is well managed.

If adjustments need to be made, they reach out immediately to the Hospice Medical Director, Associate Medical Director, Nurse Practitioner, or the patient’s Attending Physician for instruction. At that point, any necessary prescriptions are sent to the pharmacy. The patient and their family are relieved of all the back and forth between providers. And therefore, have a plan for change almost always at the time of the visit. 

The Case Manager also investigates the emotional and spiritual well-being of the patient and their family and involves the social worker, chaplain, and/or bereavement counselors as appropriate. The RN additionally sets up the Plan of Care for the Hospice Aide to provide hygiene and personal care. Safety evaluations are reviewed to ensure the patient is receiving that personal care in the safest route possible while preserving dignity. Needs for Durable Medical Equipment, such as wheelchairs, oxygen, and specialized mattresses, are determined. They are ordered for the patient by the Case Manager, and delivery is arranged to the patient’s location of residence.  All necessary supplies, such as wound care dressings and colostomy supplies, are ordered and delivered as well.

Furthermore, the Case Manager also arranges for the completion of any forms needed, such as FMLA or Handicap Parking placards. While these are the typical scenarios that arise, our Case Managers respond to all needs of our patients. They are the first line of contact and arrange other services as needed. In a non-hospice setting, the items above would require multiple provider visits, phone calls, and waiting, all adding stress to an often-difficult time.

The process of caregiving is often overwhelming and labor-intensive for the families of those touched by a terminal illness. By removing all the barriers to care that exist in many healthcare areas, our families can feel supported by their hospice care team, and they can develop a trusting relationship with their Case Manager. A Hospice Case Manager is truly an advocate for the care of the hospice patient.

Resource:

¹ Creating an effective hospice plan of care. (2022). Centers for Medicare and Medicaid Services. https://www.cms.gov/files/document/creating-effective-hospice-plan-care.pdf

There comes a time where we all need a little extra help! Transitioning loved ones to a senior living community can be stressful and overwhelming. Many questions can arise, and information is key in making this important decision.

What are the Different Types of Senior Living?

The following Senior Living Community categories can be stand-alone or be part of a campus that includes several levels of care. Traditionally, types of Senior Living may be referred to as Levels of Care.

Independent Living (Private Pay)

Independent Living is perfect for individuals 55+ who are able to manage their activities of daily living and personal affairs. Think of someone who you’d label as “self-sufficient”. These campuses offer a variety of apartment sizes and fees are dependent on size and add-on services. For example, add-on services might include things like meal plans, housekeeping, and internet, however add-on services are not always included. No state licensure is needed to operate an independent living facility.

Independent Living (Housing Authority Communities and Senior Housing)

For a more budget-friendly option, there are options outside of private pay independent living. These may be referred to as Housing Authority Communities or Senior Housing. These housing options are designated for financially limited seniors. Instead of a staff, you may see a Property Manager overseeing operations. If you or a loved one need additional financial assistance, consider looking into Illinois’ Community Care Program through Medicaid. This program can provide services such as personal care and household assistance.

Assisted Living

Easily shown by its name, Assisted Living facilities are designed to accommodate individuals 55 and older who need assistance with personal care. However, this personal care is not the level of care provided in nursing homes. Care services vary due to ownership, but may include services like meals, transportation, or medication management. Additionally, these facilities may look similar to independent living as they usually are single apartments (rarely shared) offered in a variety of sizes. Assisted Living communities are licensed by the Illinois Department of Public Health.

Supportive Living Facility

For seniors who are 65+ and in need of financial aid through Medicaid, Supportive Living Facilities may be the perfect match. These facilities offer the same access to assistance as an Assisted Living Facility; however, they are licensed by the Illinois Department of Health and Family Services. Supportive Living Facilities are required to hire Certified Nursing Assistants (CNAs).

• Long Term Care provides personal and nursing care to persons who are unable to care for themselves. These facilities can be private pay or Medicaid or a combination of both.

• Rehabilitation Nursing Facility provides short-term rehabilitation services (typically post-hospital) such as Physical Therapy, Occupational Therapy, and Speech Therapy.

Memory Care

Memory care facilities are created to provide care to those living with Alzheimer’s and Dementia. Since care for those with dementia is so unique, these facilities are secured for safety and staff are required to undergo specialized training. Additionally, these communities are required to document what distinguishes the facility as appropriate for those with dementia. Your loved one can expect a smaller community with activities tailored for those with memory loss.

What Should you Take into Account When Choosing a Community?

• Level of care needed
  • Will you need temporary care or long term? What kind of support do you need?
• Payment Source
  • Will you opt for Private Pay or depend on help from Medicaid or other financial support (i.e. Veteran and spouse benefits)?
• Your lifestyle, interests, and preferences (i.e. gardening, walking areas, exercise, meal service)
• Transportation Options
• Ratings based on state inspections
  • Inspection scores can be found at IDPH’s website.
• Location
  • Is your personal support system close by?
  • What locations will make visiting convenient for them?
  • Are you near places you like to visit? (ex. Church, parks, favorite coffee shop)
• Ownership and Management

What Resources Can You Use to Research?

Marion Area	Belleville Area
Williamson County Housing Authority	Programs and Services for Older People (PSOP)
Jackson County Housing Authority	St. Clair County Office of Housing & Urban Development
City of Marion Housing Authority	Southwestern Illinois Visiting Nurses Association (SIVNA)
Egyptian Area Agency on Aging	Age Smart (Area Agency on Aging)

For a more general overview, check out websites like www.caring.com or A Place for Mom.

When is the Best Time to Consider Senior Living?

The best time to consider a senior community is before you need it! Touring and making tentative choices can eliminate the urgency in the event of the unexpected. Think of it like choosing a college, it’s best to be educated and take tours before the time comes to make a choice. It’s important to remember to do the investigative work when your friends, family, or support system have time to tour with you. Additionally, make an appointment with the communities you are considering, so the staff can ensure they spend ample time with you.

However, disaster does not have to strike to transition to senior living. Sometimes, this change can be relative to your individual situation. Things like care of your home becoming a burden or loneliness can be the perfect catalyst to make a change.

The International Forum for the Study of Itch defines itching, medically known as “pruritus”, as the unpleasant sensation that provokes an urge to scratch. Conditions specific to the skin, underlying systemic issues, or a combination of both can cause itching. Pruritus is a relatively common and frequently frustrating symptom encountered in end-of-life care.

Common Causes

Dermatologic conditions, such as dryness, wetness, or irritation from eczema, psoriasis, or local irritants, most frequently cause localized pruritus. Skin naturally dries as we age, and hydration of the skin is the primary treatment with emollients and moisturizers. Cooling agents, such as Calamine or Menthol, can be helpful with itching also. If local inflammation is present on the skin, topical steroid creams and ointments are a solution to treat the underlying skin condition in many cases.

Metabolic derangements can also be a cause of itching, including liver failure, kidney failure, and hypothyroidism. Liver failure or liver malignancies can produce cholestasis, a condition that impairs the flow of bile from the liver to the small intestine, causing increased bilirubin levels. This typically causes generalized pruritus that can be worse on the palms and soles. Kidney failure produces a build-up of uremia, and uremic pruritus is a common symptom in individuals with renal failure, particularly those on chronic dialysis treatment. This itching is typically generalized and can be continuous or intermittent. Uncontrolled hypothyroidism can also lead to generalized pruritus and overall skin dryness.

Hematologic disorders, including iron deficiency, leukemia, lymphoma, and polycythemia vera can cause itching that is often aquagenic, meaning exacerbated by contact with water. Other solid organ malignancies, such as breast cancer, anal cancer, and prostate cancer, can generate itching around the tumor site, often associated with an overlying rash. Infestations with scabies or lice and yeast infections can cause itching in the area affected. Treatment of the underlying infecting organism is the treatment of choice.

Patients and Pruritus

Patients with HIV infection and AIDS have a higher prevalence of pruritus. Underlying skin infections, reactions to treatment medications, or subsequent viral-induced neuropathy are all causes. The pruritus may be generalized or localized to the area of the skin issue.

A true allergic cause of pruritus can also be present. This can develop due to a medication allergy or contact dermatitis due to an underlying agent. However, some medications can cause itching, not in the setting of a true allergy. In other words, the medication makes you itch, but you are not allergic to it. In a hospice setting, opioid use is usually the culprit. Some antibiotics, aspirin, and anti-inflammatory agents can also produce the same reaction. With opioids, the pruritus is typically generalized and may even cause hives. Persistent opioid-induced pruritus only occurs in 1% of patients, but up to 10% of patients may have transient symptoms.

Psychogenic itching can also be present. A true cause for the itching cannot be determined, but the scratching can become dramatic. In a hospice setting, this is common for patients with dementia.

Solutions

Regardless of the underlying cause, proper education on skin care strategies for all patients with itching is essential. These include hydration and lubrication of the skin, avoiding fragrances and irritants, and maintaining a cool external environment. Topical treatments are an option in the aforementioned situations. Systemic medications used to treat itching typically work quickly, when effective. Thus, if a prescribed anti-itch medication is not helping within a day, it is reasonable to attempt treatment with another class of medication.

Antihistamines, such as Benadryl or Zyrtec, are useful if the itching is due to a true allergic response. A class of anti-nausea medications, 5HT3 antagonists (ex. Zofran), can be helpful for patients with pruritus due to cholestasis, uremia, or opioid use. An older cholesterol-reducing medication, cholestyramine, can be helpful for cholestatic pruritus. Antidepressants, as a class, may be effective for pruritus due to multiple causes. Finally, two medications, typically used to treat neuropathic pain, gabapentin, and pregabalin, have also been found to be effective for multiple types of itching.

In summary, itching may be a common annoyance for many of us from time to time, but when the itching persists and becomes a hindrance to the quality of life, treatment is necessary. It is always best to treat the underlying cause of the pruritus if known. However, when that is not possible, due to end-stage disease, we must find ways to treat the symptom and minimize morbidity. At Hospice of Southern Illinois, our mission is to improve the quality of life for those touched by terminal illness. Sometimes that means something as simple as making the itch go away.

References:

1. Dalal MD S. Overview of pruritus in palliative care. Uptodate.com. May 10, 2021.
2. Von Gunten C MD, Kammell MD A, Ferris MD, F. Fast Facts Pruritus. Palliative Care Network of Wisconsin. Aug 2020.