Becoming aware that you are nearing death can pose an extremely emotional toll on you and your loved ones. It is normal and expected to be overcome with feelings of fear, shock, and grief. The emotions that arise from being given a prognosis of six months or less to live can impede one's desire to talk about it and make appropriate plans; but, next steps and plans must be made.
It is necessary to understand that you may experience a mix of emotions you have never encountered before, and this is normal. It would be best to give yourself the appropriate time to allow your mind to accept and cope with your new reality.
When you are ready, you should begin with making decisions that will include the kind of care you prefer to receive, what setting would be most comfortable, and whom you would like to designate to make your decisions in the event you are unable to.
Hospice care focuses on the care, comfort, and quality of life of a patient with a serious illness nearing the end of life. They aim to create a comfortable end-of-life experience and are equipped with trained and compassionate staff. If you have chosen to accept hospice care, there is a lot to know when making your final decision to ensure you have made the best one.
This article is a comprehensive guide intended to provide tips on hospice care and insight into what hospice care is and some of the things you should know when making your final decision.
In Ireland and England, hospices became the preferred place to care for terminal patients sometime around the late 19th century. It was formerly developed in 1967 England by Dr. Cicely Saunders, and her first facility was the St. Christopher's hospice. This particular method of end-of-life care has since extended in many other countries.
Hospice care was slowly integrated into the United States in the mid-1970s and has expanded into a widely accepted care facility that provides dignity and comfort in the last phase of one's life. They were initially controlled by volunteers who managed the entire facility.
By the 1980s, hospice care had grown so prevalent that Medicare formally recognized it, creating Medicare hospice benefits as part of Medicare Part A.
Hospice care is a unique style of care that focuses on the quality of life for patients experiencing a terminal, life-limiting illness. Hospice care provides compassionate care focusing on the emotional and spiritual needs of the patient in the last phases of their incurable disease. Furthermore, hospice care addresses the physical, psychological, and social needs of the patient.
The hospice philosophy is that death should be accepted as the final stage of life, and it should not be hastened or postponed but instead left to run its natural course. Hospice care centers around pain and symptom management rather than treating the illness itself.
Facilities are comprised of dedicated teams of specially trained professionals who work together to ensure the patient's last days are spent in comfort, quality, and dignity and surrounded by their loved ones.
Additionally, hospice care is centered around the family, which combines the patient and the family in the decision-making process. It also provides assistance, guidance, and bereavement care to loved ones during their difficult time.
It is best to start hospice care when a terminal illness reaches a point where it can no longer be cured or managed and when the patient has been given a life expectancy prognoses of six months or less. At this point, a doctor may recommend allowing the illness to run its natural course without remedial treatment.
Beginning as early as possible is often the best course of action to accommodate a better quality end of life with extended comfort during the critical stages of a terminal illness. Patients should talk openly with their family and caregiver about what type of care they want and when to start.
In addition, it is highly recommended that they talk it over with their doctor to discuss their options for care. It is best to get their opinion on when to start and to gather additional details that may be pertinent.
Although hospice care is designed to accommodate patients in their last six months of life, studies have shown that hospice care often starts too late in patients' diagnoses. This is attributed mainly to the patient, family, or the doctor resisting such care because they believe it means they are ultimately "giving up."
Entering hospice care does not mean the patient can no longer reenter treatment. In fact, if the patient exhibits signs of recovery, it is recommended that they be discharged and reentered into treatment with their doctor.
Entering into hospice care or having your loved one admitted can reduce stress and help your life become a little calmer. In this case, it could be a good time to begin pre-planning for when the end-of-live arrives.
Planning the perfect piece of memorial jewelry can help with the grieving process, and doing it together with your loved one can add to its sentimental value. If memorial jewelry would bring happiness to you in your grieving journey, we have a beautiful catalog of items for you to look at.
Although every situation is different, when it comes to hospice care there are certain things that are the same for every individual. Read on to learn the 10 most important things to know about hospice care.
There are many options in which a hospice patient can pay for care rendered. Depending on the situation and insurance provider, there is help for everyone.
Federally funded health insurance for 65 years or older, younger people who suffer from disabilities, and end-stage renal disease, which is permanent kidney failure that requires dialysis or a transplant.
The vast majority of hospice patients are eligible for Medicare, which covers all aspects of services and care. Hospice Care services has no deductibles, while there may be a minimal co-payment for prescriptions and respite care. Co-payment means you are responsible for paying up to $5 for each outpatient drug prescription required for pain and symptom management.
The hospice benefit may not cover such prescription drugs in some rare cases, but your hospice provider should contact Medicare to inquire if Part D will cover it. Also, patients may be required to pay 5% of the Medicare-Approved Amount for inpatient respite care.
Medicare coverage includes:
To apply for Medicare-covered hospice care, it must be confirmed from your family doctor (if you have one) that you are suffering from a terminal illness and you have been given a life expectancy of 6 months or less.
A federal and state-funded insurance program. This is optional insurance and provides coverage to low-income adults, children, pregnant women, elderly adults, and people with disabilities. The plan offers a broad spectrum of services for terminally ill individuals, including hospice care.
For the plan to be processed and approved for hospice care, the provider must first obtain a physician certification stating the patient is terminally ill. Furthermore, hospice services must be reasonable and necessary for the management of illness-related symptoms.
Medicaid hospice benefits include the following:
Medicaid coverage can be used in combination with the beneficiary's existing Medicare coverage. Although each state-funded Medicaid program has minor differences in the eligibility requirements for hospice care, the following is required by most:
Documentation from the patient's family doctor confirming a terminal illness diagnosis with a reduced life expectancy of six months or less.
The patient must complete an election form that demonstrates their understanding and agreement in accepting the hospice program.
The patient must agree to terminate remedial treatment unless they are under 21 years old.
Formerly known as Civilian Health and Medical Program of the Uniformed Services, is a health care program funded by the United States Department of Defense Military Health System. It is for uniformed service members, retirees, and their families.
Tricare includes hospice care in the United States, District of Columbia, and U.S. territories; however, it is not covered overseas. Hospice benefits cover supportive services, including pain management and counseling services, home health care services, and personal comfort items.
Tricare hospice benefits include the following:
To apply for Tricare-covered hospice care, it must be confirmed from your family doctor that you are suffering from a terminal illness; and you have been given a life expectancy of 6 months or less. Furthermore, your doctor must order hospice care, and you must complete an election form that confirms their understanding and agreement in accepting the hospice program.
Nearly all private insurance plans cover hospice care. Such plans generally cover the total cost of hospice services. Yet, each health insurance company may have an individualized requirement list a patient must meet before beginning hospice care.
Like all other coverage, private insurance plans will require that the patient be diagnosed with a terminal illness; and be given a life expectancy of 6 months or less. Furthermore, the patient must agree to cancel all remedial medical interventions and measures before starting hospice care.
Hospice care is designed to give the patient the best quality of life in their final days—the objective is not to prolong life nor accelerate death. In fact, there have been no studies that could indicate hospice care can hasten death. On the contrary, studies show that some patients live longer when receiving hospice care services.
Hospice care can be administered in multiple settings, entirely dependent on the patient and caregiver's preference and requests and is also dependent on the type of care needed. Every provider must provide the following levels of hospice care.
With hospice home care, hospice employees travel to the patient's residence to conduct routine visits to address their medical and emotional needs. Medication, medical supplies, and equipment are supplied and covered under insurance.
This category includes around-the-clock care at the patient's place of residence. This accelerated level of care is appropriate when a patient is experiencing acute symptoms that are unmanageable under the primary caregiver. Continuous care is offered at all hospices that receive Medicare as a form of funding.
This category includes temporary care for pain control or chronic symptom management, which cannot be managed in other settings. A patient generally requires skilled nursing care in an inpatient setting if their residence cannot accommodate such needed care.
Respite care is temporary inpatient care intended to be for the benefit of the family and caregiver. Caring for a loved with a terminal illness can be difficult for anyone.
In some cases, the patient is temporarily admitted into the inpatient care unit when they require medical care that cannot be accommodated in their residence or when their caregiver needs a break. Respite care is temporary and can generally only be delivered on occasion.
Not all inpatient hospice facilities can accommodate respite care; however, patients can receive more intensive care if they need it, providing them with relief.
This category includes routine home care visits by a registered nurse (RN) or social worker to meet the patients' increased medical or emotional needs. To qualify for this add-on, the patient must meet the following criteria:
The moment a patient begins receiving hospice care, they are assigned a team of trained hospice professions, including; doctors, nurses, aides, and social workers. From there, a hospice aide will have scheduled visits a few times a week, in some cases, daily. This is to help with personal care and hygiene upkeep, which includes dressing, bathing/showering, grooming, etc.
Medical updates and checkups will be complete by nurses on scheduled visits throughout the week. The frequency is dependent on the degree of care required.
The patient will also receive care from a social worker to check up on their emotional and psychological state. Providing care and supporting a terminally ill family member is very difficult, so social workers also support the family and provide guidance on planning for the funeral.
If requested, the patient will receive a visit from the chaplain to support them and to answer any spiritual or religious questions. It is also common to see volunteers spending time with the patients to provide company and friendship.
It is important to note that if hospice care begins early enough, the team will have more time to provide adequate support and help with family and patients through their difficult times. The top priority of hospice care is to provide quality care to the patient.
As mentioned above, hospice supplies all necessary medical equipment and supplies required for pain management. When the patient is released from their doctor's care, the hospice will create a pain management plan which includes supplies.
Common medical equipment used and supplied in hospice care oxygen equipment (including ventilators), Bi-Pap and C-Pap machines, hospital beds, wheelchairs/walkers/Crutches, blood pressure monitors, lifts, and kidney machines.
If your medical condition requires constant care, but you don't need to be in a hospital, you may require specific medical supplies that are either disposable or reusable products used in healthcare settings. (Most of these medical supplies can be ordered online.)
Common medical supplies include catheters, needles & syringes, gauze & bandages, central line dressing change kits, bedpans, and feeding tubes.
Your family doctor is usually the one who will authorize a list of medical equipment and supplies you require. Once you are aware of what you need, contact your insurance provider regarding your coverage. Some insurance companies may require you to obtain the equipment from specific stores.
The hospice team prioritizes helping both the patient and their family. Nurses offer their knowledge and experiences to the family, which allows them to become better caretakers for their loved one. Hospice social workers or nurses often lead family meetings designed to support and encourage the family to openly communicate their feelings and talk about the best course of action in their loved one's end-of-life.
Hospice care intends to provide comfort for the patient and focuses on the family's needs by offering compassion, support, and guidance. It is never easy to learn that your loved one has a terminal illness and discussing end-of-life choices.
The hospice team is aware of this inherent challenge; thus, they offer the families support, knowledge, and guidance to ease the process.
The hospice team continues to support the family following the passing of the patient. The family is offered support and guidance through the grieving process. If they need someone to talk to, careworkers will take the time to provide them with their attention and condolences.
Most palliative care plans provide continuous bereavement support and follow-up for the families during their initial phase of grieving. They will also direct them to external resources such as support groups and specialized bereavement counseling.
For hospice patients who suffer from chronic pain, introducing various therapeutic medications can help accomplish the intended goal of providing comfort and pain relief. The acute onset and continuous presence of pain are among the most stressful things a patient will endure. It is vital that pain management is prioritized and that the appropriate medication is supplied adequately.
Furthermore, dealing with end-of-life can undoubtedly cause extreme emotional and psychological distress, often necessitating antidepressant medication to help cope with the grief.
The six most regularly prescribed medications included in emergency kits provided to patients at admission are; acetaminophen, morphine, haloperidol, lorazepam, prochlorperazine, and atropine. The most commonly prescribed pharmacologic classes are opioid and nonopioid analgesics, anxiolytics, anticholinergics, and antipsychotics.
Complementary to prescribed medication, patients' spiritual and emotional needs always need to be tended to and prioritized. So keep in mind, medication is not the only form of remedial therapy; social workers, clergies, and volunteers provide a type of emotional treatment that cannot be achieved with medication.
Patients can be discharged from hospice care for a few reasons. If their condition improves and their life expectancy is extended beyond six months, they are transferred back into treatment with their family doctor. They would be discharged under the premise that hospice care is for patients with a life expectancy of six months or less from a terminal illness that is not improving or responding to treatment.
Furthermore, the National Hospice and Palliative Care Organization (NHPCO) indicates several more reasons that warrant hospice discharge:
Patients reserve the right to appeal an involuntary hospice discharge if they feel the discharge is groundless and unjust.
If you or your loved one is voluntarily or involuntarily discharged, be sure to prepare for the health services that will be needed post-discharge, including doctor's appointments, medication, medical devices. If the hospice care facility was the place of residence, ensure you have a new place of residence set up in time. Suppose after discharge, at any time, if the patient's condition deteriorates, they can be readmitted to the hospice.
It is a common misunderstanding when people conflate hospice care with a treatment facility strictly for cancer patients. The reason for this misunderstanding can be dated back to the advent of hospice care. In America during the 1970s, when hospice care was introduced, it was created mainly for late-stage cancer patients.
In the present day, hospice care welcomes and embraces all types of patients. Many patients entered into hospice care have cancer; however, others have heart disease, advanced Alzheimer's or dementia, kidney disease, and failure or chronic obstructive pulmonary disease.
Hospice care can be particularly beneficial for patients with advanced Alzheimer’s and dementia because they have the option for 24/7 care. We understand how incredibly challenging it can be to accept that your loved one is battling one of these diseases. So if you need any additional resources on coping, this guide offers some valuable tips.
A significant portion of people who receive hospice care are elderly, but there are no age limitations on eligibility. In the past, hospice care was explicitly for adults and the elderly; however, most programs now accept patients of all ages. So long as they meet the medical criteria, they are welcome into care.
Attempting to find a hospice care provider that we feel comfortable with can be challenging, considering the staff and level of care rendered will determine how the last stage of our life be.
Most communities have various hospice care agencies to choose from, and your doctor will support and guide you when selecting one that accommodates you best. You will be the one to make the ultimate decision, but the added support will save you time and shed unnecessary stress. When deciding, always factor in the types of services covered, staff expertise, and your insurance coverage.
Your doctor and care worker can help you find hospices in your area. Hospice care providers also are listed online with real-time reviews. The Hospice Foundation provides lists and ratings of hospice providers in your community. Visit them online at https://hospicefoundation.org/Hospice-Directory.
Perhaps your doctor does not provide you with a list of local hospice care agencies; you should contact your state's hospice organization of health or social services. They should provide you with several licensed agencies in your region. Since the state health department oversees the certification of hospice services, they will offer you a list of agencies with certification. Being certified allows them to get funding from Medicare and, in some states, also from Medicaid.
For more resources, visit National Hospice and Palliative Care Organization and the National Association for Home Care and Hospice Care. Similar to your state resources, these organizations will help you find a certified hospice care organization in your region.
Three separate governing bodies provide accreditation to the hospice care industry. They are: 1) Joint Commission. jointcommission.org, 2) Community Health Accreditation Program, Inc. (CHAP). chapinc.org, and 3) Accreditation Commission for Health Care, Inc. (ACHC). achc.org
When a hospice facility is accredited, it simply means an overseeing organization monitors their operations and standard of care and qualifies the hospice as reasonable and reliable. However, accreditation is not required, and not having it does not automatically mean the hospice is not reasonable and reliable.
The most widely accepted insurance plans are Medicare, Medicaid, Tricare, and Private. It would be best if you inquire first. If you are a Medicare beneficiary, to permit reimbursement, the hospice must be Medicare-Certified.
All patients require a unique care plan, so ensure you and your doctor notify the hospice team of your needs and requirements. It would be wise to make sure they offer all four levels; routine home care (RHC), continuous home care, general inpatient care, and respite care.
If you meet the medical criteria for eligibility into hospice care, you can start immediately. The administrative and application work for hospice care can be lengthy so ensure to ask how long it will take to enter their facility as a patient. Also, ask if they have a waitlist because if they do, and if you need care quickly, you may want to look elsewhere.
In some cases, hospice care is 24/7, but it is dependent on the type of care needed and the circumstance. In other cases, the caretaker or family will need to care for the patient if home care is the preferred level of care. It is essential to inquire on this first as all hospice care facilities operate independently of each other.
Generally, the longer a facility has been in operations, it can signify its ability to operate a functional organization. You can determine this by simply visiting their website and reviewing their "About Us" page.
Seeking out reviews can give you an idea of how good or bad the hospice is. Moreover, it is always wise to reach out to people in the medical field who may have better insight into the better hospices in your region.
This certification would indicate specialized study in palliative care. If the staff is not certified, it does not mean they are not qualified; instead, it only means they lack the specialization certification which does not make them unqualified. Keep in mind that if medical professionals work in palliative care in a hospice setting, they are likely skilled with experience.
Examples of grief assistance and support at end of life can differ widely, but the more common supports include counseling, support groups, educational materials, and outreach letters.
Ask for brochures that explicitly explain the services offered for you and your family. Accepting death is one of the most difficult things we will do, and everyone deals with it differently.
If you or someone you know is struggling with the death of a loved one, this guide has some wonderful tips that we hope you will find beneficial.
When someone is in hospice care, it means they have been diagnosed with a terminal illness, have been given a life expectancy of six months or less, and their illness is no longer responding to a treatment plan. It also means the patient willfully chose to enter hospice care after exhausting all other medical intervention resources.
Patients in hospice care will eventually experience all end-of-life stages. The patient's physical, emotional, and mental changes will be difficult for the family to observe, but it is important to try and be prepared. End-of-life-stages: 1) Weeks Before Death, 2) Days Before Death, 3) One Day Before Death, 4) Hours Before Death. The onset of changes will be most apparent and prominent during the last stages.
Veterans are eligible for standard hospice care if they are actively enrolled in benefits and meet the medical need required for hospice care. The Veterans Health Administrations (VA) benefits offer hospice care and offer specialized emotional support as part of the package.
Specialized emotional support intends to support veterans find their peace from war traumas and make the best of the remaining time with their loved ones. Some hospice care facilities even have volunteers with direct military experience.
For guidance on where to start in the VA benefits application process, visit https://www.va.gov/health-care/how-to-apply/
Yes, you can receive hospice care from home. In fact, most hospice patients receive hospice care at home. In fact, Routine Home Care (RHC) accounted for 98.2% of care provided in 2018. This includes care provided in the patient’s primary residence, an assisted living facility, a nursing home, or another congregate living facility. Keep in mind; with RHC, the primary caregiver will generally be a member of your family who will be responsible for 24/7 care. This is in contrast to inpatient hospices where specialized aides are staffed as the primary caregiver.
Not all hospice care staff members are trained in specialized training for hospice care. It is more common for health care aids to have specialized care in this space, but doctors, nurses, and social workers generally have a broad skillset.
When hiring home health employees, screening and background checks are not taken lightly, considering their vast responsibility in patient care and safety and their access to the vulnerable population. The Office of Inspector General (OIG) states that home care agencies may be required to use two types of background checks: State-wide and Federal Bureau of Investigation (FBI).
A state law enforcement agency handles state-wide background checks. It includes information about all, if any, crimes committed by the individual within that state.
A state law enforcement agency handles the FBI background check. They provide the FBI with the applicants identifying information and fingerprints. The FBI examines them against the criminal background database, and the results are sent back to the state law enforcement agency.
Hospice facilities offer bereavement care, grief counseling, and support. The patient's family can participate in any of these programs to help cope with their loss. In more extreme cases, a specialized health care worker will create an individualized care plan intended to address their grief symptoms. In some cases, this support can continue for months. Also, they may refer the individual to local support groups to seek additional help from people who have suffered the same tragedy.
The time frame varies considerably, considering the different stages of illness people are in. However, most patients enter hospice care too late into their diagnosis. According to the NHPCO, the average lifelong length of stay for Medicare patients who were enrolled in hospice care in 2018 was only 89.6 days. The median length of service was 18 days.
Contact your family doctor (if you have one) and ask for guidance and resources. The National Institute of Aging (NIH) is an excellent online resource that will guide you and supply you on how to get in touch with hospice care, palliative care, nursing homes, and assisted living agencies.
In addition, you can get in touch with The Hospice Foundation of America at 1-800-854-3402 or The National Hospice and Palliative Care Organization at 1-800-658-8898. These organizations will guide you on the next steps to take and answer any questions you may have.
Whether you or your loved one has recently been diagnosed with a terminal illness and have been told you have a life expectancy of six months or less, remember, there are resources to help you in this difficult time. Hospice care does not mean you and your family have given up; instead, it means you chose comfort and to spend time with the people you love.
Planning ahead is understandably difficult, but it is a practical approach to dealing with end-of-life. If you struggle to accept a terminal illness prognosis and can't find a way to deal with the grief, you might find this comprehensive guide helpful.
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November 6, 2021 by Frances Kay