Some patients do not want to pursue efforts for curing a fatal illness, condition or disease. Such people need hospice care. It focuses on the quality of life for patients with a life-limiting illness. The purpose of hospice care is to make sure the people who are in the last phases of incurable illness live comfortably.

The philosophy of hospice is that death has been accepted as the final stage of life. Hospice care also treats the symptoms of the disease. However, the goal of the treatment is not treating the disease itself. A team of professional caregivers manage the symptoms so that the last days of the person are spent in comfort and dignity surrounded by loved ones.

Overview of Hospice Care

Hospice is the type of medical care that provides comfort and maintains the quality of life of the patient. The care focuses on the well being of the patient. Along with treating the physical condition of the patient, the emotional, spiritual and social needs of the patient are also met.

Hospice care also provides support to the family of the patient in this difficult time. Some hospice services also assist the family after the death of the patient. Hospice care does not hasten death. The mission of the care is to affirm life and help the patient accept that death is a natural process. It also helps patients live the remaining days of their life in a fuller and comfortable way.

Hospice care can be provided at the home of the patient or the patient can receive temporary inpatient care in the facility. Hospice care is not a 24/7 nursing care center. Family members must hire caregivers or staff from the nursing home to meet the caregiving needs of their loved ones.

Services Provided by Hospice

As defined by the Medicare Hospice Benefit, 1982, hospice care includes the following services:

• Nursing: Each hospice patient gets a case manager nurse. They visit 1 to 3 days a week. These nurses are supposed to be available on-call 24/7 to address emergency needs.
• Medical social services: A patient gets a social worker who assists them with their social and emotional needs.
• Physician: The regular physician of the patient cooperates with the hospice medical center to design a care plan that meets their needs. They are also willing to provide care as and when needed.
• Medical equipment: The hospice center arranges necessary medical equipment to provide a caring, safe and comfortable environment to the patient. The supplies required include a wheelchair, hospital bed, adult diapers, oxygen, bandages, etc.
• Counseling: The patients and their loved ones often need counseling. This includes spiritual support, dietary services, and bereavement counseling for the caregivers and family after the death of the patient.
• Medication: The hospice provides medication for the patient’s diagnosis, to control the symptoms of the disease and pain management.
• Therapists: Depending on the needs of the patient, some hospice also provides occupational, physical and language therapists to the patients.
• Home health aid: All patients need personal care time after time. For that, home health aid is provided 1 to 3 times a week.
• Family meetings: The care also involves regular meetings led by a social worker or a hospice nurse to keep the family members posted on the condition of the patient. These meetings also create an environment for everyone to share their feelings. Such meetings can be a great stress reliever for the entire family.
• Respite care: Some hospice agencies also provide respite care to allow the family members and the patient some time away from caregiving. The respite care is given for up to 5 days. During these days, the family can plan a mini-vacation, attend special events or simply provide the patient with a restful environment at home or in the inpatient setting.

Note: The type of services each patient receives depends on their needs and the need of the family. The services can also be adjusted according to the patient’s condition over time.

Hospice Care Vs Palliative Care

Hospice care and palliative care have the same aim – provide relief to the patient from the symptoms and improve the quality of their life. Hospice care also includes palliative care at times but both services are not the same.

Hospice care is provided during the last phase of the incurable disease or when the life of the patient is about to end. Advanced stage of cancer is one such example. Hospice care is provided when the patient is not receiving any active treatment for the illness. The treatment given during hospice care involves managing the symptoms of the underlying diseases.

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The team at the hospice center coordinates with the patient’s physician and medical care team to devise a treatment plan. They keep on communicating as well.

Palliative care, on the other hand, can be provided at any stage of the illness. Palliative care usually is provided when the patient is receiving active treatment. The agency that is providing palliative care is separate from the medical team of the patient which is managing the treatment for the illness. However, there is consistent communication between the two teams.

Misconception about Hospice Care

Patients don’t start hospice care soon enough. The patients and sometimes their family members resist the care because they think hospice care means giving up on life since there is no hope.

Even if a patient is in hospice care, they are free to leave and receive active treatment for their disease. Hospice care is there to improve the quality of the patient’s life. It helps them make the best of each day during the last stage of the illness.

Sometimes the doctors of the patient don’t bring up hospice care as well. If the treatment of your loved one is not working anymore or they are out of options, you might want to ask them if they want to receive hospice. This could relieve their stress, improve the quality of life and help them spend a memorable time in their last days.

According to a study published in the Journal of American Geriatrics, patients suffering from a lift limiting disease take too long to get hospice care.

Usually, patients put off hospice care in the hope to have their disease cured. They end up spending the last days of their lives in pain and suffering. Their families have to struggle to take care of them at the same time. The purpose of hospice care is to increase the quality of the patient’s life as it’s reaching towards the end.

Understanding Hospice Care

Hospice care shifts the focus from medical treatment to palliative care. The patient and their family is given support and comfort. A specialized team works at the patient’s home, hospice facility or a nursing home. The physical and emotional symptoms caused by the underlying disease are treated.

To receive hospice care, two physicians have to certify that the patient is terminally ill and they have less than 6 months to live. Often, this is difficult to predict because in some cases, patients end up leaving hospice after their condition stabilizes or they want to continue curative treatment again. Depending on the situation, hospice care can be extended beyond 6 months as well. Hospice care is not a one-way street, you can return to the treatment anytime you wish to.

The Right Time to Start Hospice Care

Patients with a terminal condition such as lung disease, cancer dementia etc., should have a discussion with their doctor long before considering hospice care. If the patient is facing more and more difficulty taking care of themselves or with basic tasks like using the toilet, walking, dressing etc., they should start considering hospice care.

Then, there are medical symptoms such as pain, shortness of breath, fatigue, depression and hopelessness that can be treated with hospice care. They can be improved as well as eliminated. Such conversations are generally difficult for patients and their families. This is why patients often put hospice care off until the last moment. It is challenging to have an honest discussion about death and the process of dying. However, leaving such a conversation until the very end makes it even worse.

These signs indicate it’s time to start hospice care:

• Pain that is difficult to treat: If the pain of the patient is no longer being managed with normal treatment, it is time to consider going into hospice. The care provided there will improve the quality of life and reduce the patient’s pain.
• Frequent trips to the ER: When a patient has to spend most of his time in the emergency room, it is a sign that the ongoing treatment is no longer beneficial. The patient might be better off without the treatment.
• Dramatic weight loss: Patients often start remaining depressed and hence their appetite decreases. Reduced appetite could also be a sign that the body is preparing itself to shut down. As a result, the patient starts losing weight. It is an indication that the family should start focusing on giving comfort to their loved ones.

Susceptible to infections: When the immune system starts becoming weak, the patient starts developing infections. Infections can also be fatal. Therefore, it would be a good idea to start thinking about hospice.

Inability to perform daily tasks: When a patient starts reaching the last stage of their life, they face severe difficulty in performing daily tasks like bathing, getting dressed and going to the bathroom. It could be a sign that their medical treatment is no longer effective.

Declining mental functioning: When they have started to become irritating and there is a decrease in mental functionality, you would want to consider getting them into hospice care. This would help you spend quality moments with your loved ones while their memory lasts.

The patient has less than 6 months left: Last but not least, when the doctor himself says that the patient has less than 6 months left, it is recommended to take them to hospice. As difficult as it is to accept, when the medical team of your loved one recommends to start the process, you must listen.

Just because your loved one is entering hospice care, it does not mean they will die. The palliative care provided might help them recover. Sometimes, the patient needs emotional and spiritual support more than medication to survive. Therefore, your focus should be to provide them with comfort and care during the last few months of their lives.

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Expert’s opinion

Experts say that patients should discuss the option of hospice as early as possible after they are diagnosed with a fatal disease. It is not wise to wait for the doctor to begin this difficult conversation. Even if the patient wants to opt for aggressive treatment, they should have a plan just in case the treatment does not improve their health or condition.

Hospice care is covered by Medicare, Medicaid and even health insurance. You will get 100 percent coverage. The patient will get extra care and support without incurring an additional cost.

A doctor is not enough

Your doctor or physician who is treating your underlying condition may have suggested a treatment but it’s important to remember not all doctors can handle pain management. The caregivers at the hospice, on the other hand, are trained and experienced in palliative treatments for managing pain.

Patients in such a stage of life need someone who is willing to have a conversation with them. They need counseling and they need to have a conversation about the process of the end of life. They need someone who can provide them with compassion in their final days. They can have the best quality of life even during illness if they receive hospice care. Apart from patients, it’s a difficult time for the family members as well. Hospice services include counseling sessions for family members too.

A personal care plan is created for the patients to make sure they get all the support they need in the last months. Moreover, patients are free to leave hospice care anytime they want and go back to their treatment.

Hospice care offers end-of-life comfort and support to patients suffering from a terminal illness. The person who is about to die wants to spend a peaceful and comfortable time no doubt. At the same time, they wish to be independent and have their values and preferences respected.

Most Americans wish to die peacefully at their homes surrounded by their loved ones. They also have certain fears like losing control, suffering in pain, being abandoned or becoming a burden to others. Hospice care gives the patients and their family peace of mind.

Hospice programs help with the following aspects:

• Pain management
• Arrange medical supplies, medication, and equipment
• Teach the family members how to take care of their loved ones who are in pain
• Provide emotional and spiritual support with the aspects of death
• Offer special services such as physical therapy and speech therapy
• Provide counseling to the family and friends of the patient

The Approach of Hospice Care

When the cure of the disease is no longer possible, with hospice care, patients are able to maintain a good quality of life and die with dignity. The care plan focuses on managing the symptoms of the disease so that the person can spend the last days of their lives in a comfortable way surrounded by their loved ones.

Apart from hospice care itself, the patients are also provided with palliative care. It is the type of care that is directed towards giving comfort. Symptoms such as nausea, physical pain, confusion and breathing issues are addressed. As per the law, hospice programs must provide bereavement counseling to patients for up to a year.

Reasons to Choose Hospice Care

There are plenty of reasons that explain why Hospice care is necessary or should be chosen by a patient:

• Better quality of life

The first and foremost reason to seek hospice care is to improve the quality of life. The patient is provided with counseling, support, and community services to reduce stress. Nutritionists, social workers, doctors, and nurses who specialize in pain management, pharmacists, rehab specialists etc. together design a treatment plan to improve the patient’s quality of life.

• Reduce the depression 

Apart from providing relief from symptoms, hospice care also offers relief from pain. The aim of the care is to make the patient feel better. When a patient realizes that their life is about to end, they often go into the phase of depression. Hospice care also helps them talk about their feelings and fight depression.

• Spend less time in the hospital

Neither the patent nor their family likes spending time at the hospital. Since the goal of the care is to improve the patient’s quality of life, they are able to receive the necessary care at home.

Other Reasons to Choose Hospice Care

• A patient can receive the end of life care at the comfort of his own home instead of the hospital.
• The patient is surrounded by a team of caregivers, social workers, therapists, and pain management specialists who offer them emotional, physical and spiritual support.
• Pain management ensures that the patient spends the rest of the days of their life in a comfortable and peaceful way.
• The medications, equipment and other supplies are provided to the patient at minimum or no cost. It’s part of the Medicare plan.
• The patient is free to choose where they want to receive the hospice care – at their residential facility, hospice center or the nursing home.
• The patient will have access to the hospice team 24/7.
• Some hospice care services also include meal preparation, patient support and running errands.
• Greif support is provided to the family members of the patient prior to and after the death of the loved one.

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Why Choose Hospice Care Early

You are eligible for hospice care as soon as your physician advises that you have a terminal disease and you have 6 months to live.

It is never wise to delay hospice care. Don’t keep it for the last few days of your life. Choosing hospice care earlier does not mean that you have accepted death. This program will provide care to the patient and their family to help them cope with the situation. A patient is free to leave hospice care anytime and continue their treatment.

Early hospice care allows you to manage pain and symptoms in an effective way. This won’t just make the patient feel better, but in many cases, they live longer as well. The program helps the patient develop personal goals. As stress decreases, the quality of life of the patient improves. The patient can also receive complementary therapies like massage and music if they wish to.

Benefits of Hospice Care for Family

Hospice care is not just for the patient, it is for their family members as well. If you are thinking for more reasons to choose this program, this could be it. Here are some benefits this program can offer to the patient’s family members:

• Family learns how to participate in the care of the patient and develop a connection with them in their final months.
• They learn how to improve the quality of life of their loved one.
• The family learns how to deal with their emotions and accept the process of death of their loved one.
• They develop an early connection with the bereavement team.
• The patient and the family members get a comfortable and safe environment where they can open up and share their feelings.

When a patient decides to choose hospice care, the focus shifts from treating the underlying disease to providing care for managing the pain and other symptoms. The hospice team does everything in their power to make the rest of the life of the patient as comfortable as possible. The only way patients and their family members can reap the most benefits out of hospice care if they are admitted earlier. Therefore, it is recommended to have a conversation about hospice care with your doctor as soon as you get to know the disease you are suffering from can no longer be cured.

Hospice care is offered by a hospice center or service. The team at the hospice center works with the primary caregiver of the patients to provide care and support. However, not all hospice services provide support 24 hours a day.

It depends on the hospice, the condition of the patient and a number of other factors. If any of your loved ones are terminally ill, it is important to understand what hospice care is. According to Medicare guidelines, there are four different levels of hospice care. One patient might be receiving all levels of cares after a week of getting in the hospice care. Another patient might just be receiving level one of the care during their time in hospice care.

Every certified hospice provider must offer these 4 levels of care:

Level 1: Routine Care 

It is the basic level of service provided by a hospice center. The patient receive- services such as nursing, social services, medications, home health aide services, counseling, medical equipment and supplies, lab and diagnostic studies, and therapy services.

Level 2: Continuous Care

This type of care includes continuous home care. A nurse or a home health aid is needed with the patient 8 to 24 hours a day. Such care is a short term. The level of care is reevaluated every 24 hours.

The symptoms for which continuous care is required include nausea, vomiting, unrelieved pain, panic attacks, shortness of breath, anxiety.

Level 3: Inpatient Care 

The patients who have severe short-term symptoms and it is not adequate to treat them at home, are offered inpatient care.

The symptoms that make a patient eligible for inpatient care are as the same as continuous care. Only the environment of care is different. Nurses are available around the clock to provide emotional support, medication and treat the patient to make them comfortable.

Inpatient care might be offered in a freestanding facility operated by a hospice center, a hospice unit in a nursing home or an inpatient hospice care unit within a hospital.

Level 4: Respite Care

It’s the type of care which is more for the family than the patient. Some patients don’t qualify for continuous or inpatient care. However, their family is going through a difficult time and they need emotional support. For such patients, respite care is offered.

In some cases, the family of the patient is their primary source of care. Due to increased stress and other circumstances, sometimes, the family is unable to meet the needs of their loved ones. In such a scenario, the patient is temporarily admitted to an inpatient care so that the family takes a respite.

The respite care is for 5 days only. Once the 5-day period expires, the patient is discharged from the care.

Only a Primary Care Giver Is Available 24 Hours

When a patient is admitted in the hospice program, they have to identify an individual as their primary caregiver. They are responsible for providing daily care to the patient with the assistance of the hospice team.

The role of a primary caregiver is extremely important. Although it is a demanding role, it is highly rewarding. The primary caregiver is responsible for meeting the needs of their loved ones and add comfort and quality to their life.

They have to make sure the care is provided to the patient 24 hours a day or as needed. As one person cannot be available to provide care for continuous 24 hours, the responsibility is shared with other family members, friends and even the caregivers from the hospice. The hospice team cannot provide 24 hours care.

Who Is A Primary Caregiver?

The primary caregiver is usually a family member or a close friend. They work with the hospice team and the patient for developing a care plan depending on the preference of the patient. This caregiver continues to be the main member who makes important decisions for the patient throughout the length of the hospice care.

When the patient is receiving hospice care at home, the primary caregiver provides physical care and keeps an eye on their symptoms. Even though the primary caregiver can share responsibilities related to physical care with another member, when it comes to communicating with the hospice team, it is their responsibility. They are responsible for administrating the symptoms as well. No other family member or friend can play these roles.

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What If There Is No Close Family Member Or Friend To Become A Primary Caregiver?

There are certain cases where the patient does not have a close friend or family member to play the role of a primary caregiver. The patient needs to work with the hospice team member who comes to talk about the services.

It is important to check with your insurance company to be sure that the services of a primary caregiver are covered by the plan.

24 Hours On-Call Availability 

The patients who are receiving in-home care are not just visited by nurses regularly, they are available on the phone 24 hours a day as well. Whether or not other members of the hospice team can visit the home of the patient depends on their insurance coverage.

Special Cases of 24 Hours A Day Care 

If the patient is in crisis (their symptoms are uncontrolled or they are reaching death closer), hospice center might provide 24-hour care. The facility might send a nurse at the patient’s residence to assist them.

Another instance when a patient might need 24-hour care is when they are in the inpatient unit. Although the stay of the patient is for a short-term, they receive 24 hours of care if their symptoms need to be addressed.

Bottom Line 

The goal of hospice care is to provide the patient and their family members support at the right time. Normally, 24 hours care is not available. However, if the condition of the patient demands 24 hours of care, the hospice facility will make necessary adjustments.

24-hour on-call services are available too in case the caregiver of the patient wants assistance in treating the symptom or have a query.

Hospice care is provided by a hospice service. The team includes a variety of healthcare professionals who work with the primary caregiver of the patient to provide them with care and support as and when needed.

Hospice Services for Patients 

The goal of hospice care is to provide care and support to the patients who have only a few months to live and improve the quality of life. Each hospice care center might offer different services. Generally, these are some of the services patients will receive:

• Pain management
• Symptom control
• Social, emotional and psychological support
• Rehabilitation like occupational or physiotherapy to help the patient remain independent
• Massage therapy, music therapy, and aromatherapy
• Family care
• Companionship
• Bereavement care
• Nursing care
• Social worker services
• Dietary counseling
• Short-term inpatient care
• Respite care

The hospice care team includes social workers, doctors, nurses, therapists, hospice aids, volunteers, counselors, pharmacists, homemakers and of course, the family members of the patient.

A doctor and a hospice nurse are usually available on call 24 hours a day to support the patient and their family whenever they need assistance. The hospice team provides you with a hospice doctor. You are free to include your regular doctor, physician, or nurse on the medial team as well. They will act as attending medical professionals who will supervise the care.

Hospice care allows the patient and their family to stay together and get in-home care. Inpatient care is only provided when the patient needs it.

The Primary Caregiver

The primary caregiver is the patient’s family member or a close friend. They work together with the hospice team to develop a care plan according to the patient’s needs and preferences. They help make important decisions for the patient throughout the time they will receive hospice care. The primary caregiver is responsible for providing physical care to the patient. They may share the physical care responsibilities with caregivers from the hospice team or family members.

Who Pays For Hospice Care?

Hospice care is covered by Medicare through the Medicare Hospice Benefit. The Veteran’s Administration Benefits also cover hospice care. In some cases, Medicare covers the hospice care 100%.

Private insurance plans also cover some part of hospice care. Before getting insurance, check with your insurance company and ask them to share details about the types of plans they offer. This will let you know if they cover hospice services or not.

Each person may be considered eligible for hospice care on the basis of different eligibility criteria. The cost covered also vary as per your health plan.

Is Hospice Right for You or a Loved One?

Hospice care is appropriate for a terminally ill patient with a life expectancy of 6 months or less. The diagnoses are usually estimated. The patient might die sooner or live longer than 6 months. Experts suggest that the sooner a patient receives hospice care, the better. It improves the quality of their life and they might even live longer.

When the patient decides they want to receive hospice care, they pause the treatment of the underlying disease to seek comfort rather than the cure for the illness. Hospice treatment involves medication for alleviating pain, muscle cramps, nausea, itching, hiccups, and other symptoms. In some cases, aggressive treatments such as radiation, blood transfusion, and chemotherapy are also provided if the patient is experiencing extreme discomfort or pain.

How Long You Can Get Hospice Care?

Hospice care is for people who have 6 months or even less time left. If a patient is in hospice care and they get to live beyond 6 months, they will still receive hospice care.

If the illness of the patient goes into remission, they might not need hospice care anymore. The patient is free to revoke hospice care anytime they want.

 What Hospice Does Not Do?

Hospice care is provided at home or in any other non-medical facility. However, there are certain services that hospice does not cover such as a room or board fees at senior communities.

The care does not involve treatment and surgeries for curing the disease. The focus is to provide comfort to the patient. The palliative care might offer pain medication but it does not involve treating the cause of the terminal illness. Your Medicare plan will also specify what is not covered by your hospice care plan.

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Plan For Hospice Care When You Are Healthy 

The end of life decision is not something only your doctor should deal with. Going for hospice care does not mean that you have accepted death. This is one reason why patients and their families prolong this care. They only opt for it when they have a few months left. When the care is provided too late, they don’t receive the emotional support they deserve to accept the end of life process.

The decision to receive hospice care should be a family conversation. The patient must consult with their doctors, estate planning lawyers or financial advisors.

Entering hospice care is no doubt one of the most uncomfortable decisions a patient and their family has to make. It is never wise to wait for too long to seek specialized care. According to the National Hospice and Palliative Care Organization, only 12% of the patients in hospice remain in the care for more than 180 days. The average length of the stay is less than 70 days. In such a limited time, it is hard for the hospice team to improve the patient’s quality of life.

Hospice Services For The Family

Hospice team takes special care of the needs of the family of the patient. The team provides education to the family and friends about the disease of their loved one, how it is progressing, what to expect and how can they help their loved ones throughout the process.

The family also receives counseling and emotional support to understand the process of death and accept it. Hospice care can also mend the relationship between patients and their loved ones. They get to spend the last days of their lives in a peaceful way.

Hospice care is usually not an option if your loved ones are terminally ill. It’s generally assumed that hospice care is for the end-stage cancer patients. This type of care is for anyone who is at the end stage of a life-ending illness.

Illnesses Covered By Hospice Care?

Hospice specializes in caring for terminally ill patients suffering from the following diseases:

• Parkinson’s disease
• Cancer
• AIDs
• Kidney disease
• Heart diseases
• Stroke
• Chronic lung problems
• Alzheimer’s or dementia
• Multiple Sclerosis
• ALS
• Huntington’s disease
• Liver disease
• Cardiopulmonary disease
• Neurological conditions
• Chronic obstructive pulmonary disease
• Renal disease
• Other terminal illnesses

The patient suffering from any of the above-mentioned diseases are usually at the last stage. They receive specialized care by a team of trained health-care professionals to maximize their comfort. Hospice care is not aimed at treating the underlying illness, in fact, the care provided to the patients targets their pain and symptoms of the disease. Their physical, social, psychological, and spiritual needs are addressed.

The focus of hospice care is not to cure the underlying disease, but to provide the highest quality of life possible to the patient for the time they have left. This service is for terminally ill patients who have 6 months or less to live. The doctor of the person must certify that the condition of the patient is life-limiting.

Enrolling in hospice care ensures the patient lives a better and fuller life. In some cases, patients outlive the timeline provided to them by the doctor. Therefore, hospice care does not mean you are giving up on life. This kind of care decreases the burden of the patient’s family. They don’t have to go through a complicated process of grief.

The patient does not have to remain in the hospice facility for an extended time period. If they want private care, it can be provided to them at home. Likewise, if the primary caregiver of the patient needs a break, they can get respite care.

Eligibility Requirements for Hospice Care 

• The patient has been diagnosed with a terminal disease with a prognosis of 6 months or less.
• Frequent hospitalization during the past 6 months
• Weight loss due to the disease
• Increased fatigue and weakness
• Skin breakdown
• Recurrent infections
• Deteriorating mental health
• Assistance required in daily activities such as toileting, eating, bathing, dressing, walking

The history of hospice care 

The concept of hospice care started in the middle ages to set hospices as a resting place for pilgrims and travelers. By the end of the 19^th century, hospice care facilities were designated to care for the dying. Nurses, social workers, and physicians showed their commitment towards patient-centered care. The first hospice care was opened in Ireland and then in England. Ever since the hospice program was spread across most of the developed countries across the world.

Hospice services were designed to provide palliative care to patients who have less time left. The Medicare hospice benefit was authorized under the Medicare program to cover the cost of hospice care.

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How to select a hospice care program?

To figure out which hospice program is best for your loved one, talk to the doctor, nurses, counselors or social workers involved in the program. You can also contact the National Hospice and Palliative Care Organization for further assistance.

Before you choose a hospice program, there are some questions that will help you evaluate your options:

• Start with the hospice care team. Find out how they are trained and screened. Is their hospice medical director board certified?
• Is the program profit or non-profit?
• Do they have a dedicated pharmacist to arrange the medications?
• Do they offer residential care?
• How are they pain management services? Are they willing to manage the symptoms of your disease?
• Are they willing to provide 24/7 care when needed?
• How long will it take to have your loved one accepted into the program?
• What kind of services are provided to the patient’s family? Are they willing to provide respite services and bereavement services?
• If the patient’s circumstances change are they willing to provide care services in different settings?

If your loved ones are suffering from any of these above mentioned illnesses, talk to their doctor about hospice care as soon as you can.

Have you or your loved one received a doctor recommended for hospice care? If yes, then your first question would be how long do I have to live in hospice care? Experts say that there is no single answer to this question. It depends on the patient’s condition.

Average Stay at Hospice 

Many people think admitting their loved ones into hospice care means they are losing hope and hasting their demise. The purpose of hospice care is to improve the quality of life of patients for whatever time they have left.

Hospice is not reserved for the final days of the life of the patient. Although the eligibility criteria say that the patient must have 6 months or less left but many patients have been able to extend their life successfully. The soon you choose hospice care for your loved ones, the longer they might be able to live.

Generally, it’s recommended to spend the last 6 months at hospice but whenever a patient wants to leave the service, their decision is welcomed. The maximum length of the patient’s eligibility is usually 6 months.

Unfortunately, patients pass away within 3 weeks of admission. This happens because they admitted late. The data collected by the National Hospice and Palliative Care Organization says that the average length of a patient’s stay at hospice care has decreased to 67.4 days.

Final Days In Hospice Care

During the final weeks of the patient in hospice care, a patient might go through some physical changes. Emotional and spiritual changes, on the other hand, might be obvious. Here are some changes that indicate the patient might be heading towards the end of their life. As painful as it is, the family of the patient needs to be aware of these changes:

• Mental confusion
• Change in breathing
• Excessive sleeping
• Skin might feel cool to touch
• Incontinence

Can Patients Be Discharged From Hospice?

You will be surprised to know that many patients are actually discharged from hospice. It’s either because their condition improved or they planned to resume the treatment of their disease.

Usually, patients might be given less than 6 months to live in hospice care. If their life expectancy increases beyond 6 months, they are discharged from the care.

According to the National Hospice and Palliative Care Organization, here are some reasons to discharge a patient from hospice care:

• The patient’s medical condition is no longer terminal
• The patient decides to leave hospice care
• The patient is transferred to another hospice facility
• The patient is discharged out of the care because of uncooperative or abusive behavior

If you or your loved ones want to get discharged from hospice care, you must plan ahead for any health care services that might be required in the future. Revoking hospice care will also opt you out of Medicare hospice benefit you were receiving such as therapeutic services, medical equipment and other medical supplies.

In case the patient decides to return to hospice care and their 6 months period was not complete, their decision will be supported.

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Waiting Too Long To Get Hospice Care

When you wait too long to get hospice care, you jeopardize the patient’s condition. If a patient is entered to hospice when they have a few weeks like, it is extremely difficult to optimize the benefits of the care. They are unable to receive comfort and quality of life in such a short span of time. The benefits of hospice care include pain management, help with physical activities, and spiritual support. Hospice service also includes bereavement support to families. It is extremely difficult to receive optimal care when very little time is left.

There are some patients who are dying but they don’t fall within the 6-month window. This makes them ineligible for hospice care. Such patients must still remain under the care of regular physicians. Then, there are patients who might have a year or two to life. They certain need high level of care but they cannot receive hospice services.

If better strategies are developed to address the needs of those who deserve hospice care, it might encourage the patients and their families to think about hospice care sooner instead of waiting until the last moment.

No family wants to be placed in a difficult position of choosing hospice care for their loved ones. But when the doctors say that “there is nothing more we can do” you have no choice. The patient has to leave the hospital and get hospice care instead.

Many people don’t fully understand the difference between hospice and hospital. There is a kind of sickness that is curable and the kind that is incurable. The one that’s curable is treated in a hospital and the patient is given curative care for it. On the other hand, the sickness that is incurable is treated in hospice by providing the patient with palliative care.

Hospital Care

If a patient is suffering from pneumonia, it’s a curable sickness. The doctors in the hospital will treat it with antibiotics and fluids. The patient will be recommended to get enough bed rest.

The patient in the hospital has the right to receive high-quality and safe care. The patient and the doctor have clear communication about the condition and the treatment options available.

The patient also has the right with their medical team for developing a health plan that meets their healthcare needs the best. The primary focus of hospitalization is to sustain the life of the patient. Anyone with a medical condition can get hospitalized.

Hospice Care

Hospice care is another name for curative care that is designed to fight the sickness of the patient. Whether the disease is curable or not, the doctors and physicians design a health care plan to treat the symptoms of the condition and promote the patient’s health.

Hospice is focused on the end of life care of the patient. The goal of the care is usually to make the medical and the emotional pain of dying comfortable and peaceful for the patient. Along with the patient, their family is provided with psychological and spiritual care. Hospice care can be provided in the patient’s home, a nursing home, a specialized hospice setting or a hospital.

There are limitations to receiving hospice care. A patient who has 6 months or less time to live is eligible in hospice care.

Caregivers in Hospital and Hospice Care

A key difference in hospital and hospice care is the primary caregiver. In hospice care, one of the family members or friends are the primary caregivers. In a hospital setting, the doctors, nurses, and health care professional provide care. They are available to address the physiological as well as spiritual needs of the patient.

Cost of Care Hospital and Hospice Care

Your private insurance, Medicaid or Medicare usually pay for hospice as well as hospital care. However, hospice care is less expensive as compared to hospitalization. That’s because the focus is only care, not treating the underlying disease. Additionally, the patient’s family acts as their caregiver. Therefore, a member from the medical staff does not have to be available 24 hours with the patient.

How Is Hospice Care Different?

A patient receives physical comfort and compassion during the 6 months of life they have left. One is free to opt hospice care the moment they feel the undergoing treatment for the disease is getting cured. A patient can also decide not to undergo further treatment regardless of the improvement in their disease. Hospice care can begin anytime the patient wants, provided if they are eligible.

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Despite the benefit of the care, many people tend to delay and even refuse hospice care because they believe it will shorten their life or opting for hospice care means giving up on life. However, neither is true. Hospice care does not cause a patient to die soon. In fact, many patients who receive hospice care soon show signs of improvements. Some are able to outlive 6 months and some even choose to receive the curative treatment again. The earlier they start receiving hospice care, the more beneficial it will be for the patient as well as their family.

When a patient admits to hospice care, they get complete support of medical professionals such as social workers, hospice aid, nurses, doctors, physicians, volunteers, chaplain, and even bereavement support. The family is given support through this difficult time as well. Such care is not available in a hospital, one has to receive counseling separately to cope up with the grief.

When a patient has less than 6 months to live, doctors suggest getting hospice care. It’s the comfort care that focuses on pain management and making the patient enjoy a good quality of life for the time they have left.

Medicare has defined 4 different levels of hospice care. Each level offers different benefits to the patients and their family. They are:

1. Routine home care
2. Continuous home care
3. General inpatient care
4. Respite care

1: Routine home care

This type of care is for patients who don’t have symptoms that are out of control. Their controllable symptoms include pain, nausea, acute respiratory distress, bleeding, vomiting, agitation or restlessness.

The patient is visited by nurses, social workers, counselors, health aid, chaplain, medications and provided with equipment as and when needed. The patient’s needs are outlined in a health care plan formulated by the hospice team and their physician. The medical staff is available on-call 24 hours a day.

2: Continuous home care

This level of hospice care is provided is at the patient’s home in case they are suffering from uncontrolled symptoms. They will receive continuous care of nurses until their situation is better.

The type of care offered here is similar to inpatient care except that the patient stays at their home. The hospice provides a nurse who stays with the patient around the clock to take care of their symptoms.

24/7 care is provided in case the patient is experiencing the following symptoms:

• Shortness of breath
• Anxiety and panic attacks
• Severe pain
• Nausea and vomiting
• Breakdown of the primary caregiver support system

3: General inpatient care

When a patient’s symptoms are getting out of hand and they can no longer be managed at home, they are taken to inpatient care. The hospice facility takes aggressive actions for controlling the symptoms and making the patient comfortable again.

Depending on the situation, the patient might be placed in acute hospital care or a temporary hospice facility. The patient’s physician and hospice team ensures that they get maximum comfort. Once the symptoms are under control, the patient is returned back to their routine care.

4: Respite care

This level of care is temporary and it’s actually designed to benefit the family of the caregivers. The patient receives inpatient care for short-term basis. Sometimes, the primary caregiver of the patient needs a break or have to attend a wedding, funeral or graduation ceremony, etc. Since the patient is terminally ill, they cannot be left unattended. In such a situation, the patient is taken in respite care for a limited number of days. It is usually for 5 consecutive days.

The patient is admitted in a hospice facility until their family returns. Respite care is not provided to all patients. It’s only meant for qualifying hospice patients. However, it can provide relief to the family and free them from the worry of their loved one for a while.

Not every caregiver needs a break, therefore, respite care is not provided to everyone. Caregivers are provided relief by other means. The hospice team members can help family members with tasks such as running errands, take the patient for a walk or to meet their friends.

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Choosing the Right Type of Care for Your Loved One

Every person has unique needs and therefore, they will need a care plan tailored according to their medical condition as well as desires. Some patients only need minor assistance with their daily activities while others constant care.

If you are unable to decide which care is right for you or your loved one, you can talk to your physician also. Learn about each type of care on your own and match the facilities provided as per the condition of your loved one. This will help you narrow down the right type of care.

Summing Up

Many people have misconceptions about hospice. It is true that it’s meant for terminally ill patients. However, the goal of the care is to provide comfort and improve their quality of life.

Hospice care does not mean you are giving up on life. Even though the patient when enters hospice care stops curative treatment, they can start that treatment anytime they think they are feeling physically and emotionally stable to continue.

Patients entering hospice care suffer from a variety of diseases most of which are terminal. Over time, the frequency of certain terminal diagnoses for hospice patients has changed. Initially, when hospice care started, it was designed for cancer patients. However, the hospice diagnosis has more non-cancer patients now.

Since 1998, lung cancer was the most common diagnosis for patients. Later on, in 2006, non-Alzheimer’s dementia became a common diagnosis. Now, there is a notable increase in patients with neurologically-based diagnoses.

4 Primary Diagnoses for Hospice Patients

The NHPCO has presented data revealing the primary diagnosis of hospice patients. According to that data, here are the top 4 hospice diagnoses.

Cancer

Despite the gradual decline in the number of admissions due to hospice, Cancer still dominates the ranking. Advancement in treatments and early diagnosis and cure has reduced the number of cancer patients worldwide.

Such cancer patients are admitted to hospice care who are facing a continued decline in health despite of receiving therapy. Certain types of cancers with poor prognosis is also eligible for hospice care.

Dementia

The second most common diagnosis is hospice is Dementia. End stage Dementia necessitates that the patient receives detailed care since they might not be able to perform the basic functions of life without assistance. They are also susceptible to infections and care is required for managing symptoms.

The patient suffering from Dementia must meet the following characteristics to be eligible for hospice care:

• The patient must be in stage 7 of dementia
• They must be unable to dress, bathe, use the restroom, and ambulate without assistance
• Lack of meaningful verbal communication

Heart Disease

There has been an increase in the percentage of patients with heart disease. The patient will be taken in hospice if they meet the following criteria:

The patient has been optimally treated for their condition. They are either not eligible for a surgical procedure or they have declined the procedure themselves

The patient has congestive heart failure or Angina and because of physical activity, their discomfort has increased.

Lung Disease

The most common lung disease for patients entering hospice care had been a chronic obstructive pulmonary disease. Patients with stage 4 COPD have a shorter life expectancy and hence, they are likely to enter hospice care at this time.

Other Common Diseases

Apart from the 4 primary diagnoses, here is a list of other common hospice diagnoses:

• Huntington’s Disease
• HIV
• Stroke
• Muscular Dystrophy
• Coma
• Multiple Sclerosis
• Amyotrophic Lateral Sclerosis (ALS)
• Cerebral Vascular Accident
• Liver Disease
• Renal Failure Chronic
• Parkinson’s Disease
• Non-specific Terminal Illness

When is Hospice Admission Necessary?

These are some conditions that indicate the patient must be admitted to hospice care as soon as possible:

• Progressive weight loss
• Frequent hospitalization over the past 6 months
• Increase in fatigue, weakness
• A decline in cognitive and functional abilities
• Unable to perform daily living activities such as dressing, toileting, bathing, eating, walking
• Breakdown on skin
• A decline in mental abilities
• Recurrent infections

It’s understood that at some point, it is not possible for a terminal illness to be cured. Other times, the patient might choose not to undergo the treatment because of personal choice. Hospice care is designed for all such situations. Instead of treating the underlying disease of the patient, hospice care attempts to treat the symptoms of the disease and improve the quality of their life.

Hospice care is not just for the patient, it’s for the family of the patient as well. They are provided with all the support needed to get through the painful process of accepting that their loved one is going to leave.

Hospice is an approach to provide the best care. It is not tied to a specific place. The care can be provided in the patient’s home, nursing facility, and hospital or in a hospice center itself.

Hospice care offers a team of specialized individuals such as doctors, social works, nurses, spiritual advisors, and volunteers to provide the best care to the patient. All these professionals work together to provide medical, emotional and spiritual support to the patient and their family. Although the professionals are not available physically 24/7, they pay regular visits and they are available on call 24 hours and 7 days a week. This ensures that all the needs of the patient are addressed optimally.