When you or a loved one face a terminal illness, you needn’t walk the journey alone. Fortunately, hospice care offers comfort care with the compassion and dignity you deserve. The more you know about it, the easier it can be to make informed decisions.
1. What Are the Levels of Hospice Care?
As a hospice patient, you’re entitled to four different levels of comfort care as defined by Medicare. Each level includes professional members of your hospice interdisciplinary team. It’s an efficient way to address your physical, mental, emotional, and spiritual needs.
One of the many benefits of hospice care is that you’re treated as an individual, not a number. After your physician has determined that you have a limited life span, you’re eligible for the hospice services of your choice. The hospice medical director and the team will work with you and your family to develop the best level of hospice care for you.
The four levels have similarities and differences, depending on your approved care plan. The goal of your hospice team is to keep you comfortable with as much choice and dignity as possible. Here are hospice levels and how they’re designed to help you:
Hospice Routine Home Care
Hospice routine home care is the basic level of service that all hospice patients receive. It includes scheduled visits from nurses, state-certified nurses’ aides, and other support staff. They all work together to help you and your family in this difficult time.
When you’ve been diagnosed with a terminal illness, you need the extra support that hospice provides. Unlike continuous care, routine home care is a scheduled routine and isn’t in 24-hour time blocks. These caring professionals are available for visits no matter where you call “home,” be it residential, assisted living, hospice house, or skilled nursing facility.
Most routine visits include a nurse taking your vitals, reviewing your medication, and making notations for the doctor. Maybe you need assistance with daily activities for a living, such as bathing, dressing, and other personal tasks. Your care plan may provide personal care from a state-certified nurse’s aide. These STNA services are also often required in the three different levels of hospice.
Hospice services holistically address your needs, meaning physical, mental, social, emotional, and spiritual. You and your family can request routine visits from your hospice’s professional support staff. They include social workers, spiritual care coordinators, bereavement counselors, and trained volunteers.
Hospice Continuous Care
This level is also known as 24-hour in-home hospice care. It’s reserved for crises such as acute pain or symptom management and isn’t a routine visit. Since it’s primarily a medical issue, you’ll have nursing staff with you 24 hours at a time until the pain issues are resolved.
Sometimes, the nurse may need an STNA for practical duties during continuous care. You and your family also have the option of requesting supportive services staff. As soon as the medical director and nursing staff see a resolution in your pain and symptoms, they can return you to the routine level of care.
In-Patient Hospice Care
Each person is different and so are their pain control issues. There may be an instance when you or your loved one’s acute pain or systems can’t be controlled in a home environment, although all efforts will be made. In this case, you have the option to accept in-patient hospice care in a Medicaid-approved hospice in-patient facility, hospital, or skilled nursing facility.
Whichever you choose, it must be staffed by at least one 24-hour registered nurse to provide direct care for you. Unlike continuous hospice care, in-patient care can’t be done in your home or assisted living facility. When the pain and symptoms are effectively controlled, you and your family can decide to stay in the facility or go home for your routine care.
Hospice Respite Care
It’s the duty of the heart to care for your loved ones when they’re sick, disabled, or have a limited life span. No matter how much you love them, you’re only one person, and you have limits. It’s common for loving caregivers to experience burnout, including physical, mental, and emotional exhaustion. Plus, you deal with the unfounded guilt that you aren’t superhuman and are somehow failing your loved one.
The good news is that you can request the fourth level of hospice care, which is respite. If you’re caring for your hospice patient at home and are completely overwhelmed, the hospice team can admit your loved one temporarily into a hospice or skilled nursing facility.
This hospice level of care lasts for a maximum of five consecutive days, and your loved one will get the nursing care they need. Plus, you will get a well-deserved break to rest and recoup your energy.
2. Hospice at Home vs. In-Patient Hospice Care: What are the Pros and Cons?
As a hospice patient, you or your family member has a right to say where they will receive hospice services. While many people opt to be in the comforts of home, others may choose to be in a skilled nursing facility. It’s just according to the patient, family, and what’s best for them.
Hospice at Home Pros & Cons
When you’re at home, you’re surrounded by the familiar, and you feel more “in charge.” You can have all the hospice services right at your doorstep. Plus, it reinforces your choice to pass at home surrounded by your loving family.
However, your home isn’t always equipped with everything you need in a moment of pain management crisis. You would also need to send an emergency call to the hospice on-call nurse. If you have in-patient hospice care, the equipment and nursing staff are available around the clock.
In-Patient Hospice Care Pros & Cons
Another positive about in-patient hospice care is that you may not choose to pass at home. Perhaps that’s something you don’t want your family to remember, and you’d rather be in a facility. You would have the advantage of facility care plus your routine and other levels of hospice care.
The downside is that you have people you don’t know caring for you, and you may lack the comforts of home. You also may not have a private room and share with a roommate. These are all considerations for you and your family when deciding which level is best for you.
3. What Does Hospice Do?
Many folks hear the term hospice and don’t fully understand what this type of care involves. While hospice care is often part of palliative or end-of-life support, there’s a difference between the two. It’s possible for patients who aren’t terminally ill to have routine comfort care toward the end of their lives.
However, hospice care focuses on comfort care for patients who have a terminal diagnosis and they’re no longer seeking a cure. To meet the criteria and be admitted into hospice, you must have a condition that gives a prognosis of six months or less to live.
Over 59 Years of Helping Patients
According to the National Hospice and Palliative Care Organization, the concept was introduced to the United States by Dame Cicely Saunders in 1963. The term hospice had been used for years as a place to care for monks and nuns who were passing. Florence Wald established the Hospice of Connecticut in 1974 with a team of medical personnel and religious leaders. It was the first hospice in America.
Today, hospice is an essential part of the American healthcare system. It’s a supportive service that’s directed by a medical team and staffed with compassionate professionals. Since hospice is a service that caters to those who are sick, it gives both the individual and their families education as well as social and emotional support.
It’s About Making Patients Comfortable
Hospice doesn’t seek to prolong life, but the primary goal is to offer terminally ill patients optimal comfort care with as much dignity and purpose as possible. The staff works with patients and their families to deal with the many end-of-life issues. It empowers the patients to find peace and meaningfulness in their limited time.
The dedicated team of nurses, STNAs, therapists, social workers, spiritual counselors, and volunteers work together for a care plan that’s best for patients and their families. Hospice emphasizes quality of life over quantity to make the most out of the patient’s remaining time.
Hospice services focus on controlling symptoms and minimizing the pain that’s often associated with terminal conditions. It’s often called comfort care because of the goals to ease discomfort and support the patients and their families. Hospice strives to keep patients comfortable wherever they call home.
The well-trained medical team will use state-of-the-art intervention when it comes to maintaining quality of life. However, aggressive therapeutic treatments aren’t consistent with comfort care philosophy. If a patient and their family choose to revoke hospice services and restart aggressive treatment, the hospice team honors their decisions. This medical service maintains patients’ rights to live out their remaining days in the peace and comfort of their own homes.
Who Qualifies as a Hospice Patient?
The qualifications for you or a loved one to be admitted as a hospice patient is outlined by Medicare. According to the guidelines, your physician must have diagnosed you with a terminal illness that limits your life expectancy to six months or less. You also agree to the hospice philosophy of having comfort care instead of seeking treatment for a cure. Instead of your regular Medicare benefits that are geared toward these treatments, you elect to have hospice benefits.
The good news is that Medicare will still cover medications and treatments that are related to other health conditions, like diabetes, high blood pressure, etc. Medicaid-approved hospice services can care for you at your private residence, assisted-living center, hospice house, or at a skilled nursing facility, per the guidelines.
4. What to Expect from Hospice Services?
One of the many benefits of hospice services is that it honors your right to choose where to spend your remaining days. If you’re like most people, you may feel a bit nervous about strangers coming into your home to provide medical care and other hospice services. If you are caring for a terminally ill family member, perhaps you may feel like you’ve let them down by bringing in other caregivers.
The whole concept may seem overwhelming or intimidating at first. It’s helpful to remember that as a hospice patient and family, you’re still in control. You have the say when it comes to scheduling visits for nurses, STNA’s, and other hospice support staff. If you’re caring for your loved one, the hospice team isn’t barging in to take charge.
Instead, they’re a team of knowledgeable and compassionate professionals who are there to support you and your family members. You’re still in control, but they are the extra hands you need, a listening ear, and a shoulder to cry on during difficult times. Once you or your loved one is officially admitted into hospice services, the medical director and your physician will discuss a care plan that’s best for you.
Of course, you’re involved in each step. Your care plan will consider your medical history, comfort level, symptoms, and life expectancy. You have the right to say how much or how little of services you desire. This is all about making the patient more comfortable and not infringing on any privacy.
What are the Benefits of Hospice Care?
The main benefits of having hospice services are that you can choose where to spend your remaining days and you know that your comfort and dignity are top priority. According to hospice guidelines published by Medicare, these are some other benefits you can expect from hospice services:
- Physician benefits
- Skilled Nursing Care
- Home Health Aide Care
- Prescribed medical supplies and durable medical equipment
- Prescription medication
- Physical and occupational therapy for comfort
- Speech and Pathology Services
- Social Worker Services
- Grief Counseling for Patient and Family
- Registered Dietician Counseling
- Short-term in-patient and respite care to manage pain and symptoms
- Other Medicare Services pertaining related to other conditions
5. Comparison Table: Hospice Care vs. Palliative Care vs. Comfort Care
All three of these specialized patient plans have a goal to minimize pain while maintaining comfort and dignity. For the most part, palliative care and comfort care are used interchangeably. Here are some of the similarities and differences.
Hospice Care
Who is eligible?
Any person who has a physician-diagnosed terminal illness that limits life expectancy to six months or less who needs assistance can benefit from these services.
What Patients are usually involved?
Most patients on hospice services include those with heart disease, cancer, respiratory disease, kidney failure, end-stage dementia, HIV/AIDS or ALS. The difference between comfort care diagnoses and hospice diagnoses is that hospice care requires a prognosis of six months or less.
What is Involved?
Hospice utilizes things like symptom control, emotional and spiritual support, help with vital end-of-life preparations, and assistance with coordinating care with patient and family caregivers.
Is Curative or Life-Prolonging Treatment Involved?
No, no life prolonging efforts are utilized during hospice. If a patient wants to try to seek such remedies, then they will need to revoke hospice services to do so.
Who is Involved?
Hospice staff includes well-trained doctors, nurses, STNAs, spiritual counselors, social workers, grief counselors, and trained volunteers. The team works together for the benefit of the patient.
Where is it available?
You can receive hospice services in the comfort of your home, or at an assisted living facility, skilled nursing center, a Medicare-certified hospice house, or a hospital.
The choice is yours, and it may alternate as your needs and illness progress.
How Long Do Services Last?
You will receive services if you meet criteria, which is that you have six months or less to live with a terminal illness. Should anything change, then you would no longer qualify. Your hospice team will be with you from the moment you start the services until the end of life.
When Can Services Take Effect?
You can begin receiving services as soon as you have a terminal diagnosis and meet other eligibility requirements. A nurses will do an assessment and the proper paperwork to get you admitted into hospice services. Once approved, care will begin right away.
How is it paid?
Don’t worry, as hospice is not something you need to pay for out of pocket. It’s fully covered as a Medicare benefit. When facing a terminal illness, money is the last thing on your mind, so you won’t have to worry about your care costing you one cent.
Palliative/Comfort Care
Who is eligible?
To be eligible for palliative care, you need to have a terminal illness. Unlike with hospice, people who receive palliative care can also seek curative treatments.
What Patients are Usually Involved?
You can receive comfort care services for the same diagnoses as those who receive hospice services. However, you may still seek aggressive and curative treatments while on comfort care, which you cannot do when you’re on hospice.
What is Involved?
Palliative care is very similar to hospice care, which focuses on symptom control, emotional and spiritual support, and care plan coordination. The difference is that palliative care involves helping patients make medical and treatment decisions but doesn’t deal with end-of-life issues.
Is Curative or Life-Prolonging Treatment Involved?
Unlike with hospice services, patients with palliative care services may decide to have curative or life-prolonging treatments without revoking any services.
Who is involved?
The same care plan team as with hospice services, such as doctors, nurses, social workers, and other professional supportive staff will assist you. Both programs have the same skilled professionals and the support you need, the only difference is that folks on palliative care can seek treatments to extend life.
Where is it available?
In most places, palliative care services are offered in hospitals and skilled nursing facilities. Unfortunately, they aren’t always available in all areas. Hospice services are available everywhere in the United States, even in small, rural communities.
How Long Do Services Last?
Palliative care will last as long as necessary, which is gauged by both your diagnosis and insurance coverage.
When Can Services Take Effect?
You can get services as soon as you’re diagnosed, and comfort care is recommended. You will need to go through the same procedure to get enrolled like with hospice care, but the process happens very quickly.
6. In What Settings Hospice Care is Provided?
One of the guiding principles of hospice care is that terminally ill patients have the right to spend their limited time in the comforts of their own home, wherever it may be. As a hospice patient, you or your loved one has peace of mind knowing that your quality care will be tailored to your needs. Here are the Medicare-approved settings in which you can receive hospice care.
Private Residences
For most people, nothing compares to the comforts of home, especially if you’ve lived there for years. It’s a heart-shaped part of your family’s history that’s seen laughter, tears, and a lot of love. The caring hospice professionals respect and understand your choice for spending your final days at home.
The hospice nursing and support staff will meet with you and your family to create the best visiting schedule for your needs. The nurses will provide routine comfort care with the assistance of STNAs, as needed. You’ll also have the option to accept or decline supportive services from social workers, spiritual care coordinators, grief counselors, and trained volunteers.
It’s important to remember that nobody is coming into your home and taking over everything. Hospice staff will be respectful as a guest and will not overstep their boundaries within your personal space. Your comfort, independence, and dignity are always paramount.
Assisted Living
According to statistics, at least 80,000 Americans live in an assisted living facility. Most residents are seniors who require assistance with a few activities for daily living, but they don’t need 24/7 nursing care as in a skilled nursing facility. Although assisted living accommodations and amenities may vary, residents enjoy as much privacy and independence as those in private residences.
Hospice care provisions for those in assisted living facilities are the same as those who live in a private residence. As a hospice patient, you or your loved one will receive all the benefits and services tailored to fit your wants and needs. You’ll still have the convenience of your regular skilled nursing or homemaking visits provided by your assisted living facility.
They can work together with you, your family and the hospice team to ensure you stay as comfortable as possible. At some point, hospice patients in assisted living facilities may need more direct care. The hospice staff can help you transition to a skilled nursing facility or a hospice house if you should decide. You or your family member will always remain the hospice team’s top priority.
Hospice Houses
Some regional hospice services offer a specialized hospice house, also known as hospice centers. Hospice houses combine state-of-the-art comfort care with all the loving touches of home. Patients usually have a small private suite that’s ideal for them and their loved ones.
In some larger hospice houses, the suites may feature a kitchenette and a separate room for families who want to stay overnight. The benefit of being in a hospice house is that they are staffed with registered nurses and other nursing personnel around the clock. Along with their routine visits, you or your loved one can contact a hospice chaplain or support staff who are on-call.
Most hospice patients and their families appreciate that hospice houses have a cozy home feeling rather than a sterile, unremarkable medical facility.
Skilled Nursing Facility
Perhaps you or a family member have chosen to live in a skilled nursing facility because you need 24-hour nursing care. While these facilities are often for people of advanced age and frailty, it doesn’t necessarily make them hospice eligible. Residents can continue to enjoy quality of life for years with these issues. However, hospice services are always available for those with a terminal diagnosis of six months or less.
There’s often a misconception concerning hospice care for skilled nursing facility residents. Some may reason that if you have facility staff caring for you or your loved one’s needs, hospice care would be an unnecessary service. They haven’t considered how the facility staff and hospice staff work together to provide the best comfort care for a hospice resident.
The skilled nursing staff is responsible for caring for several wards of residents. Many of these residents require staff assistance with their activities for daily living, like eating, bathing, and dressing. A hospice-eligible resident may require extra one-on-one comfort care that would be difficult for facility staff to provide.
When you and your family accept hospice services, the hospice team will bridge the gap to help your regular skilled nursing staff. They will be working closely with your doctor and the hospice doctor to ensure all orders are followed. It’s not a competition between services. Instead, benefits from both sides unite to hold your hand during this difficult time.
Hospital
In some cases, patients may receive a terminal diagnosis of six months or less while in the hospital. If this, is you or your loved one, do you have the option to be admitted to hospice services? Unless your symptoms are out of control, the hospital will usually release you to go where you choose for hospice care, either home or a facility.
It’s a myth that hospice patients aren’t permitted to go into the hospital. It is your and your loved one’s right to seek medical attention in a hospital or clinic. If you decide to go to the emergency room or be admitted to the hospital due to symptoms of your terminal illness, hospice services must be revoked. The good news is that you can be re-admitted to hospice once you’ve returned home.
However, if you have a medical emergency unrelated to your terminal illness and go to the emergency room, you’re still covered by hospice. A prime example may be that you accidentally fall and have broken a bone. As long as you aren’t seeking curative treatment, your hospice services will continue in a hospital setting.
7. Questions to Ask Before Signing on with Hospice
When it comes to any medical care for you or your loved ones, informed decisions are the best. While Medicare has strict guidelines to make hospice services uniform nationwide, some hospice organizations may be better than others.
Before you agree to be admitted into any hospice organization or facility, gather as much information as you can. Here are some pertinent questions for you to ask any potential hospice provider.
Is your hospice organization licensed by the state or the federal government?
Frequently, states have additional requirements for licensure. It’s your right to view any credentials from the hospice provider you’re interviewing. They should be forthcoming with answers to these crucial questions, as it can mean the difference in your services being covered by Medicare or Medicaid.
What are your procedures for scheduling routine visits to our home from hospice nursing and support staff?
A professional and efficient hospice provider should schedule staff according to your needs. They should also have routine meetings with you and your family to discuss any changes necessary to your care plan. Your comfort is the goal, and they should accommodate relatives’ schedules who are assisting.
How will your hospice medical director work with my physician?
Just because you’re admitted to hospice services doesn’t mean that you can’t visit your doctor anymore. The hospice medical director should work with your personal physician regarding medication and symptom control related to your terminal diagnosis. Rest assured, doctors from all specialties work together for the good of their patients.
Do you train the hospice nursing and support staff that care for me at home?
Everyone that comes into our home should be thoroughly trained to serve you. Hospice medical personnel include registered nurses, licensed practical nurses, state-certified nurses’ aides, and certified nursing assistants. All these professionals should be licensed and in good standing with your state nursing board.
Supportive staff such as social workers, spiritual care coordinators, and grief counselors usually have advanced degrees, certifications, and experience in their given field. Hospice volunteers must pass a background check and complete specialized training for volunteering in a hospice setting.
Above their education and state-certified credentials, most hospice staff receive specialized training by the provider and continuing education requirements. Reputable hospice providers won’t have a problem with meeting and talking with prospective hospice staff before you decide to be admitted.
What’s the ratio of hospice patients to each hospice nursing and support staff member?
There’s no specific guideline for how many patients a hospice can take on, but there’re standards that exist. However, they do recommend that hospice providers consider their ability to meet the needs of their patients and families to formulate an optimal staffing ratio. They should also consider the available resources for achieving quality hospice care goals.
Depending on the size of the hospice provider, the patient care loads are usually divided among registered nurse case managers. These case managers have other assigned nursing staff on their team. The support staff is also given a caseload for routine and as-needed visits.
Such assignments also provide continuity of care, so you’re familiar with the staff serving you. You need to know that you or your family member will receive the optimal care you need and deserve.
How does your hospice staff respond to after-hour emergencies?
When choosing a hospice provider, make sure they have an efficient answering service for after-hour emergencies. When you’re in pain or have out-of-control symptoms, you need the assurance of prompt medical attention any time of day or night.
8. Home Health and Hospice
Home health care is a temporary service that provides skilled nursing and therapy to people in their homes, per doctor’s orders. The goal is for the patients to improve and regain as much independence as possible.
In some instances, you can be a hospice patient and still have home health services for a condition that’s not related to your terminal illness. While hospice services are available in private homes and facilities, home health care can only be provided in your residence.
9. Home Care and Hospice
Home care is a professional, non-medical service that provides companionship, light housekeeping, and help with activities for daily living for people who wish to remain in their own homes. It’s available without prescription and is a beneficial option for people with disabilities. State regulations for homecare may vary, and it must be paid for by private insurance or state Medicaid.
If you’ve been admitted to hospice, some of these services are provided to you with your hospice benefits. However, you may require 24/7 assistance that home care can provide. In this case, you may have home care and hospice simultaneously.
10. Frequently Asked Questions
You and your family members may have other questions to ask potential hospice providers. They will listen to your concerns with respect and compassion and answer all your inquiries. Here are some frequent questions people ask about hospice services
What does hospice do for cancer patients?
Receiving a terminal cancer diagnosis can be devastating for patients and their families. Hospice services can help manage terminal cancer pain and the complications of past treatments. Plus, hospice emphasizes quality of life and finding a loving purpose in the time that remains.
What does hospice do for Alzheimer’s patients?
Alzheimer’s disease is progressive, and patients can live with it for years. It slowly erodes the person’s memory and ability to care for themselves. Hospice services for end-stage Alzheimer’s patients help keep them as comfortable as possible while providing emotional and spiritual support to them and their families.
What does hospice do for dementia patients, and what qualifies a dementia patient for hospice?
Yes, patients with dementia are eligible for hospice if a physician certifies that their condition is terminal, and their life expectancy is six months or less. Most dementia patients experience pain and frequent infections that keep them in and out of the hospital. Hospice services can alleviate those regular admissions by providing comfort care and support to the patient and their families at home or in a facility.
What does Medicare pay for hospice, and what part of this coverage pays for this care.
Federal guidelines state that Medicare Part A will cover expenses related to hospice services. These include skilled nursing, social services support, pain management, and other services related to comfort care and your terminal diagnosis.
You’ll have a 5 percent co-pay on all prescriptions related to your hospice diagnosis. Should you require temporary in-patient or respite care, you’re responsible for 5 percent of the cost. If you’re also a state Medicaid recipient, it may pay for the co-pays that Medicare doesn’t.
Is it long-term hospice care, and what is considered long-term hospice care?
To be eligible for hospice benefits, your doctor must have diagnosed you with a terminal illness with a life expectancy of six months or less. If you recover or opt for curative treatments by chance, you’ll no longer be eligible. Many hospice patients do well and exceed the six-month estimation.
Every six months, the hospice medical director will make a face-to-face visit to certify that your diagnosis is still terminal, and your life expectancy is still six months or less.
What can you do for the person and family members of those in hospice?
If you’re a friend or family member of someone in hospice care, your loving presence and support mean a lot. Be there for them as compassionate listeners and offer any help they may need. Hold their hand as they travel down this challenging path that we call the end of life.