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By: Joelle Jean, FNP
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 report not being asked what they need to care for themselves. Caregivers can work up to 8.3 hours per day or 66 hours per week during 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.
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:
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.
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:
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.
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.
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:
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.
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:
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.
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:
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:
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.
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.
Self-care is imperative for caregivers caring for their loved ones in hospice. Self-care means caring for yourself, so you can improve your health to care for others.
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.
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.
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.
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:
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.
The terms ‘hospice’ and ‘palliative’ care often get confused. Although they are similar, there are differences between these two types of 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.
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:
The interdisciplinary hospice team will focus on things like:
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.
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.
The palliative care team offers services such as:
The chart below can be used to help gain a better understanding of the difference between hospice and palliative care.
Please contact us if you have any questions about the quality hospice services Ohio Valley Hospice provides.
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.
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 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 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.
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.
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:
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.
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.
Find expert hospice care with Ohio Valley Hospice. Contact us to learn more.
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.
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.
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:
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:
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:
Patients in their late stages of heart failure (HF) are candidates for hospice. Providers should consider hospice if the patient has:
Patients with end-stage lung disease and lung cancer are hospice candidates. Providers should consider hospice if the patient:
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:
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:
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:
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:
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.
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 hospice referrals means early management of symptoms by:
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.
Ohio Valley Hospice 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.
Ohio Valley Hospice’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.
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. Ohio Valley Hospice 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.
Caring for a loved one facing a terminal illness can be demanding, but it can also be incredibly fulfilling. Ohio Valley Hospice 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 Ohio Valley Hospice 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.
Ohio Valley Hospice 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
Ohio Valley Hospice 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:
Veteran-To-Veteran Volunteer Program
Ohio Valley Hospice’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?
Choosing Hospice is often a difficult decision. We help lead this conversation and can ease the anxiety of the transition from cure to comfort for patients who are appropriate for hospice care. If two or more of these potential indicators are present, hospice should be considered.
End Stages of: Cancer, Heart Disease/CHF, Pulmonary Disease/COPD, Dementia/Alzheimer’s Disease, Neurological Disease/CVA, Renal Disease & Liver Disease.
If your loved one is requiring increased assistance with Activities of Daily Living (ADLs) such as bathing, dressing, grooming, oral care, toileting, transferring to their bed/chair, walking, eating, etc.; this may be an indicator that hospice should be considered.
Additional indicators include:
If you have questions about the hospice benefit or when to elect your benefit, please contact Ohio Valley Hospice at 513-527-2222.
One word… One word that’s the most solidifying word you will ever hear. A word that can often be misinterpreted.
One word… Hospice.
This means you are dying. Maybe not dying today, tomorrow or the next day – but it is a word not many want to hear. As a hospice liaison, helping people understand to not be afraid is part of what makes my job so rewarding. Watching potential patients and their family member begin to ease as I explain the role of hospice is an incredible feeling.
As a hospice liaison, I help ease all your previous notions about what we do and assure you that we are here to help.
Hospice doesn’t mean you will die tomorrow. It does not mean you will be taken off all your medications or stay home while waiting for the end. What it does mean is that you have a terminal illness and instead of continuing to seek aggressive treatment, it is better for you to be comfortable and have a quality of life with loved ones, however that may be defined by you.
It is shown that a hospice patient lives more comfortably when: a nurse visits to manage pain and symptoms, a home health aide provides personal care, a social worker assists with community resources and counseling, a chaplain offers spiritual support, volunteers play cards with and a physician oversees it all to ensure you are as comfortable as possible for however long that may be.
That one word… Hospice. Let’s look at it in a more positive way, focusing on the benefits we can offer a patient and their family.
So, I ask both professionals and patients – Why would you not want to live more comfortably with support from hospice?
-Tracy Wagoner, Hospice Liaison
Pandemic Relief via legislation, CMS waivers, and enforcement discretion
Telehealth and Telephonic Visits
In an effort to protect patients, some SNF, LTC, hospice, and other facilities are limiting the number of visits that Abode Healthcare staff may make to patients in their care. Some patients are even requesting fewer in-person visits to reduce their exposure to the outside world.
Abode Healthcare understands and joins in these protection measures by offering telehealth visits. In some cases where access has been limited or is desired, Abode staff are utilizing telehealth on a weekly or bi-weekly basis in order to maintain contact with high-risk patients.
In all cases, telehealth visits are meant to be supplementary to in-person patient visits. Telehealth visits should not replace in-person visits altogether.
Our commitment, as always, is to serve our patients as best we can. Our clinical team has been trained in effective ways to utilize telehealth systems to streamline patient care through our own remote access system using the following tools:
Though telehealth is never our first choice, it is the right choice during this time. Abode Healthcare continues to partner with providers to preserve the health and wellbeing of all of our patients.