Caring for a loved one who is terminally ill and on hospice is emotionally and physically taxing. In 2015, an estimated 39.8 million caregivers provided unpaid care to an adult with a disability or illness. The estimated value of the service supplied by caregivers is up to $470 billion since 2013.
Caregivers may deny help from others, perhaps out of guilt or obligation. However, 1 out of 6 caregivers reportnot being asked what they need to care for themselves. Caregivers can work up to 8.3 hours per day or 66 hours per weekduring their loved ones’ last days of life. Often, this is in addition to working a full-time job and caring for their own immediate family.
Caregivers are at risk for depression, severe fatigue, or burnout, or even health issues such as hypertension, stroke, obesity, or weight loss due to stress.
What is a caregiver?
A caregiver, also known as an informal caregiver, is an unpaid individual or group of individuals who provide care to a loved one. Caregivers can be a spouse, family members, partner, friend, neighbor, or combination of these individuals.
A caregiver assists their loved ones with activities of daily living which include:
Medical tasks such as giving medications, changing wound dressings, and managing pain
A caregiver can also play a significant role in coordinating care for their loved ones. Many are appointed power of attorney or the primary decision maker for their loved ones, managing finances, property, and most suitable medical care for the individual.
What causes caregiver stress or burnout?
There is no clear definition of caregiver stress. The Merriam-Webster dictionary defines stress as “a physical, chemical, or emotional factor that causes bodily or mental tension and may be a factor in disease causation.” Burnout can be a response to stress, defined as extreme emotional exhaustion. According to stress.org, stages of burnout are:
Apathy or loss of interest
A caregiver with stress or burnout exhibits signs of feeling overloaded, overwhelmed, emotionally drained, tiredness, detachment from the person they are caring for, and a reduced sense of accomplishment.
Who is most affected by caregiver stress?
Caregiver stress affects the person or people directly caring for their loved one. Stress can also affect caregivers in different ways. For example, one caregiver may find specific tasks stressful or overwhelming while another caregiver may find the task relaxing and rewarding.
What are the signs and symptoms of caregiver stress?
Often, caregivers are not aware of their stress or feeling of burnout. Signs and symptoms of caregiver stress can be subtle or obvious. It is important to identify caregiver stress so it can be eased.
Anxiety is a stress response, activating the fight or flight response that happens chemically in the brain. Physically, anxiety can be described as:
Increased heart rate
Feelings of doom or hopelessness
Stomach pain and or spasms
Feeling weak or tired
Caregivers suffering from stress may not realize they are fatigued. Fatigue is the body’s response to burnout and can be physical, emotional, or psychological.
Stress can cause weight changes and affect eating patterns. Weight change can occur when dealing with caregiver stress. Rapid weight gain or unexplained weight loss is a warning sign of caregiver stress and should be addressed appropriately.
Caregivers may become easily annoyed or short-tempered with loved ones, family members, or friends. Feeling irritable may be a warning sign of caregiver stress.
Feelings of being overwhelmed
Feeling overwhelmed or anxious is normal. Caregivers may become overwhelmed with the amount of care needed to provide to their loved ones. Trouble concentrating, changes in sleep patterns, and changes in eating habits may occur.
Losing interest in activities can be a sign of depression due to the demanding responsibilities of caregiving. Signs of depression include:
Little interest or pleasure in doing things
Feeling down or hopeless
Change in sleep patterns
Fatigue and tiredness
Thoughts of death or suicide
Potential health risks as a result of caregiver stress
Chronic stress (or stress lasting for more than six weeks) can have lasting health problems. Caregivers exhibiting signs and symptoms of stress and burnout have a higher chance of developing health risks.
High blood pressure
Caregivers can suffer from high blood pressure due to the stress of caring for a loved one in hospice. If caregivers have already been diagnosed with high blood pressure, stress can make the disease worse. Uncontrolled high blood pressure puts caregivers at higher risk for:
Atherosclerosis or disease of the arteries
Weakened immune system
The immune system is in place to protect the body from illness and disease. Stress can cause a weakened immune system. With a weakened immune system, caregivers can become sick or develop chronic illnesses such as:
Inflammation throughout the body
Increase in fat in the blood and body
Frequent colds and infections
Short term memory loss
Studies have shown that a symptom of chronic stress is the shrinking of the brain. Shrinking of the brain causes short-term memory loss. Short term memory loss affects learning, judgement, and memory process.
Headaches and body pains
Stress can cause headaches and body pains. On a hormonal level, the increase of cortisol causes headaches even at rest. The physical nature of caring for a loved one on hospice- lifting, standing, walking, and rotating- can cause severe body pain or injury.
How to relieve or prevent caregiver stress and burnout
Finding the time and the energy to exercise might sound difficult. However, even carving out 30 minutes a day has positive effects on your health. Exercising whether it is running, walking, swimming, or doing yoga will lower blood pressure, increase energy, and improve mood.
Asking and accepting help from others
Accepting help can be difficult for some caregivers. It is important to ask and accept help so that you are available for your loved one mentally and physically.
Under most insurances and Medicare, respite care is available to relieve the burden of caregiver stress. Respite care will give short term caregiver relief to those who are in need.
Eat and sleep well
Eating and sleeping well are fundamental in protecting your physical and mental health. A well-balanced meal of fruits, vegetables, and plant-based foods is important for physical and mental well-being. Adding vitamins such as a multivitamin, vitamin D, or vitamin B-12 can also help improve your mood and energy.
Having a good night’s sleep has many health benefits. Feeling well-rested and energized will only benefit you, as the caregiver, and your loved one. Improved memory, mood, and overall well-being are all benefits of quality sleep.
Seek out support groups
Support groups add immense value to caregivers who are caring for loved ones in hospice. Joining support groups reassures caregivers that they aren’t alone. Support groups:
Allow you to talk about your feelings
Help you realize others are going through the same situation
Reduces stress and depression
Teaches coping skills and ways to divert stress
Maintain personal relationships
Maintaining personal relationships is as important as joining support groups. Meeting up with friends or family members allows you to relax. It also allows you to take time for yourself and time away from your loved one.
Awareness of caregivers’ stress and burnout must be addressed and acknowledged for caregivers to feel supported and recognized for their challenging work. The hospice team and its services are a fundamental part of bringing this awareness to the forefront.
Hospice and Palliative Care: What’s the Difference?
The terms ‘hospice’ and ‘palliative’ care often get confused. Although they are similar, there are differences between these two types of care.
What is hospice care?
The focus of hospice care is on quality of life when a cure is no longer possible or when the burden of treatment outweighs the benefits. In general patients receiving hospice services have a life-expectancy of six months or less if the illness runs its usual course. Many people think hospice care is just for elderly people or cancer patients, but that is not the case. Hospice benefits people of any age, with any life-limiting illness. The goal of hospice is to provide comfort care by managing pain as well as providing emotional and spiritual support to the patient and their family.
Where is hospice care provided, and who is involved?
Hospice care can be provided anywhere the patient calls home, including nursing facilities in which they may reside. It involves an interdisciplinary team that includes:
A hospice physician (or medical director)
Certified Nursing Assistants
Chaplains or other spiritual support
Bereavement coordinators or counselors
What will the hospice team do?
The interdisciplinary hospice team will focus on things like:
Pain and symptom management
Providing medication, medical supplies, and equipment
Educating caregivers on how to care for the patient
What is palliative care?
Palliative care, like hospice, focuses on quality of life. The difference is that palliative care is appropriate at any stage of a serious illness, not just at end-of-life. It’s an extra layer of support that treats the symptoms of an illness and supports the entire family. Patients who are receiving palliative care can continue to receive curative care such as chemotherapy, radiation, dialysis, and surgery.
Where is palliative care provided, and who is involved?
Patients can receive palliative care in settings such as hospitals, nursing homes, specialized clinics, and at home from a team of specially trained doctors, nurses, and other specialists. This team will work closely with the patient, their family and caregivers, and the patient’s other doctors to ensure everyone is on the same page.
What will the palliative care team do?
The palliative care team offers services such as:
Pain and symptom management
Care coordination with the patient’s current healthcare team (i.e. physician)
Assist with care plan development
Practical help with completing forms and making decisions about care
Help with advance directives
A side-by-side comparison of hospice and palliative care
The chart below can be used to help gain a better understanding of the difference between hospice and palliative care.
Having a hospice provider working as a partner with a nursing home may improve the quality of care a nursing home resident receives during end of life. Many studies have shown that having a hospice presence in nursing homes reduces hospital readmissions, improves the facility’s performance scores, and facilitates conversation between the resident and their families regarding end-of-life treatment options.
The difference between nursing homes and hospice
When a loved one’s health condition declines, the decision to transition to comfort care is not an easy one. However, before a decision is made you must know the difference between a nursing home and hospice.
Hospice care services
Hospice is an approach to care for people experiencing a life-limiting illness. It offers comprehensive services that address the physical, spiritual, social, and emotional needs and preferences of the patient and family. The hospice team includes nurses, doctors, social workers, certified nursing assistants, and chaplain and bereavement services to ensure that the patient receives medical, physical, emotional, and spiritual support in any place the patient calls home.
Nursing homes and long-term care facilities
Nursing homes and long-term facilities serve as a place where the patient lives and needs assistance with activities of daily living such as bathing, dressing, and toileting. Care is provided by trained nurses that are ready to handle the nursing and medical requirements of the residents.
Patient hospice care eligibility
For a resident to qualify for hospice care, the resident must meet the hospice eligibility requirements that have been established by the U.S. Centers for Medicare & Medicaid Services (CMS). Although there is not a standardized list to qualify, CMS guidelines help with determining if a resident’s condition is appropriate to receive hospice care.
Role of hospice in long-term care homes
Hospice care is provided wherever an individual resides, which includes long-term care facilities and nursing homes, and provides specific services at the end of life to residents and their families. The long-term care facility staff provides residential, custodial services to the resident, while hospice care tends to the end-of-life needs. This is what makes hospice and the long-term facility mutually beneficial to each other. Here are few examples of the role hospice plays in long-term care facilities:
Specialized skill sets. Hospice staff provide additional expertise to the long-term care facility which include quality of life and comfort during the end-of-life phase. Additionally, once the resident has passed the family is provided with grief support.
Improved resource management. The hospice team will coordinate everything related to the hospice plan of care, including medications and coordinated care for the resident that includes their primary doctor, hospice doctors, hospice aides, and hospice nurses.
Expert medical education. The hospice team provides education that focuses on the resident’s condition, symptoms, and medications.
How hospice can assist nursing home staff
The hospice team and the nursing home staff share the responsibility for the resident’s end-of-life care.
The nursing home’s staff has a key role in the care of residents since these professionals are often the first individuals to notice changes in the resident. It is important to educate nursing home staff on recognizing signs and symptoms of end-of-life and when to notify the proper healthcare provider. The hospice team provides education that focuses on the resident’s condition, symptoms, and medications, and how to best care for a resident’s medical needs.
Coordinating patient care
Hospice staff helps in the coordination of the resident’s care and medications needed across all their healthcare providers, hospice team, and nursing home staff. This coordination of care assures proper communication and gives the resident’s family the ability to have questions answered.
By Joelle Y. Jean, FNP
Due to its busy nature, providers in the Emergency Room (ER) may not immediately identify patients for hospice care. Approaching patients or family members about hospice can also be challenging-especially if they have specific questions. This hospice checklist can help guide providers on when they should consider a patient for hospice.
What is hospice?
Hospice is for patients who are at the end of life. Patients can have a terminal illness or declining health from a chronic illness. The hospice team can coordinate care with health care providers to manage and treat patients.
Benefits of hospice
Initiating hospice early in the disease process has many benefits for the patient and family members. Hospice is there to improve the quality of life and provide comfort for patients during their end of life. Benefits of hospice include:
Improved physical and psychological symptoms
Lowered hospitalization costs
Reduced hospital deaths
Barriers to initiating hospice
Studies have shown that providers initiate hospice too late- patients die within weeks of entering hospice. There are barriers that cause ER providers to wait or not consider hospice. Some barriers include:
Not having the right resources
Breakdowns in patient-clinician communication
Failing to identify terminal stage of life
Geographical and socioeconomic barriers
Head-to-toe hospice checklist
Alzheimer’s disease and dementia
Patients in the late stages of Alzheimer’s disease or dementia are candidates for hospice. At this stage, they start to lose activities of daily living (ADLs) and cannot complete basic functions on their own. These functions include:
Other signs providers should consider patients with Alzheimer’s disease or dementia for hospice are:
Loss of the ability to walk (life expectancy is about a year)
Patients in their late stages of heart failure (HF) are candidates for hospice. Providers should consider hospice if the patient has:
Visited the ER two or more times in the past six months
A decline in ADLs
Severe HF symptoms such as dyspnea, angina, fatigue
Not responded to pharmacological and non-pharmacological interventions
Ineligible for surgery
Weight and muscle loss
NYHA class three/four heart failure
Lung disease and lung cancer
Patients with end-stage lung disease and lung cancer are hospice candidates. Providers should consider hospice if the patient:
Has frequent ER visits
Increased weight loss
Increased dyspnea at rest even with oxygen
Stage four non-small lung cancer
Patients with end-stage liver disease are candidates for hospice. Liver disease is the 12th leading cause of death in the United States. Patients with liver disease are often overlooked for hospice care. Providers should consider hospice for patients with end-stage liver disease if they are:
Ineligible for a liver transplant
Depression and anxiety
A decline in cognition and weight
ER providers can opt for hospice for patients with cancer if treatment is no longer working or there are no other treatment plans. Patients also at the end stage of their cancer can benefit from entering hospice early. Other signs a patient is ready for hospice are if the patient:
Has increased weakness
Significant weight loss
In bed for most of the day
It’s not always easy to identify patients with sepsis who qualify for hospice. However, some patients meet the criteria. Providers should consider patients with sepsis for hospice if the patient:
Has impaired kidney failure
Not responding to pharmacological treatment
Require mechanical ventilation
Injury to the liver
Hospice is available to patients who are at the end of their life. They can entire at any stage in their disease process. Initiating hospice early benefits the patient. Studies have shown that hospice improves mood, decreases medical interventions, and enhances the patient’s overall quality of life.By: Wilma Peterson, RN
According to the American Lung Association, Chronic Obstructive Pulmonary Disease (COPD) is the third leading cause of death in the United States. Living with the symptoms of COPD, such as difficulty in breathing, can induce stress for both the patient and the family. Due to this, Doctors are beginning to call for earlier hospice referrals for these patients with COPD. If elected early, the benefit of hospice care can assist with symptom management, prevent unnecessary hospitalizations, and help patients achieve a better quality of life.
Patients with advanced COPD are eligible for hospice care, which is fully covered by Medicare, some private insurances, as well as assistance from Veterans Affairs. When hospice care is chosen early, patients have access to the appropriate care and medications, allowing for more restful periods and easier breathing. Identifying these factors early can relieve symptoms such as anxiety, panic, labored breathing, and intractable coughing that are uncontrolled with regular medications and traditional therapies.
Factors to consider when discussing the appropriateness of a hospice referral for a COPD patient include:
The patient has a projected life expectancy of 6 months or less
All therapies, including medications and rehabilitation, have been exhausted
The patient has frequent emergency room visits and hospitalizations due to exacerbation of COPD
At this point, the patient is considered to be in the advanced stages of COPD, and the discussion for hospice and end-of-life care should begin.
Eight benefits of early hospice referral for those with COPD
Electing the hospice benefit early allows for the expertise of a focused team of professionals:
Hospice services are available 24/7/365. The hospice care team will provide medical, emotional, psychological, and spiritual support to the patient and family. Here are eight benefits of early hospice referral:
Early intervention. The earlier the hospice referral is made, the more time it allows the patient and their family to select the right hospice company and be a part of the care plan.
Managed care. A physician leads the hospice care team and can order the appropriate medications and therapies and cater to an individualized care plan for each patient.
Skilled Nurses. A registered nurse will meet with the patient and family, and can admit the same day. The nurse will also reconcile all medications, put together a plan that focuses on managing symptoms, and provide relief of pain and respiratory distress.
Hospice Aides. Health aides assist with normal daily activities:
Other household chores, as needed
Medical Social Worker. A social worker will support patients and families with accessing resources within the community, such as respite care, living arrangement and other services.
Chaplain. Clergy works with the patient and their family to support psychological and spiritual needs, assisting them through the end-of-life, grieving process or any other related needs.
Ancillary services. Other ancillary services like physical therapy and occupational therapy, strengthen muscles to assist with safety and allow for a sense of independence.
Respite Care. Allows time for self-care and rest, which can help with a change in attitude and mindset in caring for your loved one.
Living easier with hospice care
Early hospice referrals means early management of symptoms by:
Having the appropriate therapy and staff when needed
Avoiding the stress of emergency exacerbations and unnecessary hospital visits
Providing a more individualized approach to the patient and caregiver
Alleviating stress to allow time for future planning or ability to spend quality time
Don’t wait, make the referral to hospice early. An early hospice referral can provide extra support for both the caregiver and the patient. If you or a loved one is struggling with COPD, consider the benefit of hospice services.The holidays can be a challenging and bittersweet time for those with a seriously-ill loved one. Electing the hospice benefit may seem like one more item on your to do list, but hospice can ease the burdens of facing a life-limiting illness. If a loved one has unmanageable symptoms, they could end up spending their holiday in the hospital, away from family and friends.
Hospice of the Midwest helps families manage their loved one’s pain and symptoms so they can spend the holidays in the comfort of home–whether that means in their own home, in a loved one’s home, or in a skilled nursing facility or assisted living facility that they’ve made their home.
Hospice Care in the Comfort of Your Home
Whether your loved one is being cared for at home or in a facility, the additional layer of support that hospice can provide can make all the difference. Hospice care can help manage complex symptoms of pulmonary disease, cancer, dementia, Parkinson’s, heart disease, stroke, liver or kidney disease.
Our interdisciplinary approach, which includes care from a nurse, aide, social worker, chaplain, medical director, and the patient’s primary care physician, is designed to support patients and their families physically, psychologically, and spiritually. With the assistance of this personalized care team and the guidance of the patient’s primary physician, your family can have the support necessary to keep your loved one comfortable and supported without unnecessary hospital visits or doctor appointments.
Hospice of the Midwest’s team is local and available 24 hours a day, 7 days a week, 365 days a year to provide care for our patients and for admissions.
Hospice can also provide necessary durable medical equipment, such as a hospital bed; medications related to the patient’s primary hospice diagnosis; and incontinence products and nutritional supplements. By utilizing hospice services, families have more time to enjoy the most meaningful moments of the holidays — time spent together with family.
“Hospice of the Midwest has always been great with communication and are very pleasant to work with. We love teaming up with them to ensure our patients receive the best care possible.” – Amy, Director of Nursing at Windsor Manor in Grinnell Family & Caregiver Support this Holiday Season
With holidays comes stress, as time runs out to shop, run end-of-year errands, and attend special events. Combine that with caring for a seriously-ill loved one during these unprecedented times, and life can become overwhelming quickly.
Our hospice care extends beyond the patient. Hospice of the Midwest works closely with family members to assure they have the tools necessary to cope with stress or caregiver burnout surrounding what may be the final holiday with someone they love. In addition to scheduled visits, patients and their families will have access to a dedicated hospice nurse by phone who is available to answer your questions and dispatch a nurse to your home as needed.
Our team of chaplains and social workers collaborate to address patient and family members’ emotional, psychological and spiritual needs. They make certain our patients’ families have a plan for the holidays, so they can make the most of the holidays without piling up additional stress.
“I’m so glad I had hospice directly involved at the end of my mother’s life. People need to take advantage of hospice and be encouraged to use it – especially this holiday season.” – Bridget Tessler, Daughter of HOMW Patient
Caring for a loved one facing a terminal illness can be demanding, but it can also be incredibly fulfilling. Hospice of the Midwest can partner with you or your loved one’s facility to ensure everyone – patient and family alike – is supported and cared for this holiday season.
If you have a loved one with a life limiting illness, please contact us to learn more about how Hospice of the Midwest can help your family this holiday season, because home should be more than a holiday wish!Care at no cost to Veterans and their families.
Hospice of the Midwest collaborates with local VA agencies and programs to raise awareness about the benefit of hospice services for Veterans. As a Veteran, expenses for hospice-related services or enrolled veterans are covered in full.
We Honor Veterans Program
Hospice of the Midwest partners with the We Honor Veterans program to give veterans the best care possible. This program provides resources and training to meet the needs of our veteran patients and their families through respectful inquiry, compassionate listening, and grateful acknowledgement so that veterans can have a peaceful end-of-life experience.
VA Hospice Program Benefits
Hospice is a benefit that the VA offers to qualified Veterans who are in the final phase of their lives. This multi-disciplinary team approach helps Veterans live fully until they die. The VA also works very closely with community and home hospice agencies to provide care in the home. The VA hospice benefit includes:
Care available wherever you call home
No co-pay for hospice care
Medical equipment, medication and personal care supplies
Personalized pain and symptom management
Care coordinated with your doctors
Physical, occupational and other therapy services
Spiritual care and support
Volunteers with military experience (when available)
Ongoing grief counseling for patients and family
Veteran-To-Veteran Volunteer Program
Hospice of the Midwest’s Veteran-to-Veteran volunteer program pairs Veteran volunteers with hospice patients who are Veterans as well. Veteran volunteers have the ability to develop a unique connection with patients and their families through their common experiences and stories, establishing a strong relational bond.
How can Veteran Volunteers Help?
Reminisce or tell life stories
Educate and answer questions regarding Veteran benefits
Assist in pinning ceremonies, distribute certificates and help with other recognition events
Assist in replacing lost medals
For many people, the decision to receive hospice care is made following the diagnosis of a life-limiting illness. Even so, some families still question this decision. Here are some common Hospice qualifiers to help determine when it might be time to elect the hospice benefit.
Frequent physician, ET and/or Hospital visits
Weight loss and or BMI < 22
Decline aggressive therapy or is not a candidate
EF < 20%
NYHA Class IV symptoms at rest
Little or no response to Bronchodilators
Serum < 2.5
Dysphagia and/or aspiration pneumonia
Shortness of breath and/or o2 sat of 88% or less
Upper respiratory infections, bronchitis or pneumonia
Hospice of the Midwest supports that our patients have the right to determine their own goals of care during the final stages of their illness. We focus on comfort, support, quality of life, and education. Hospice of the Midwest promotes a patient-centered approach.