Hospice

Choosing hospice care can be a difficult decision. Often, the conversation is hard and can bring a weight of reality to your situation. Even so, choosing end-of-life care may be the right and best next step for your family. Hospice care can actually lighten your load as a caregiver and make your remaining time as a family more enjoyable and comfortable.

If you’re wondering if it’s time for hospice care, here are 6 signs to consider. But first, let’s start with a basic understanding of the purpose of hospice care and how it can help your sick loved one as well as the rest of your family.

The Purpose of Hospice Care

While the phrase “hospice care” may seem a little scary, it’s important to remember the true mission and purpose of hospice care organizations. Hospice programs are designed to support and guide families. The experienced staff will care for your loved one during their final days and assist your family with caregiving needs. The goal of hospice is to allow a person to die comfortably and with dignity in their home or hospice centers, surrounded by those they love.

6 Signs That it’s Time for Hospice Care

Now, let’s talk about 6 signs that may signal it’s time to consider whether hospice might be the right option for your family.

1. Rapidly declining overall health

Perhaps the biggest sign that it’s time to consider hospice care is when there is a significant decline in health. Frequent trips to the hospital or reoccurring infections can quickly lead to a lower quality of life. Even less severe trends such as increased sleeping, mental confusion, and falls can be causes for concern.

Another clear sign that end-of-life care may be needed is if the individual is experiencing constant pain or shortness of breath. Hospice nurses are equipped to care for these types of health issues and can offer relief from pain or discomfort.

2. Given six months to live by a doctor

When a loved one receives a terminal diagnosis, end-of-life care is usually the next conversation to have. Hospice care organizations offer medical care, comfort, and support to families. If you have financial concerns, Medicare or Medicaid often cover many aspects of end-of-life care, provided the doctor determines that life expectancy is six months or less.

Even if you enroll in hospice care, it’s possible that the terminally ill person could make a full recovery or symptoms may lessen. If this occurs, great! You can always discontinue care or request to receive care for longer than the standard six months after talking with a doctor. If it seems likely that they won’t recover, though, end-of-life care could be the right option for maintaining the best quality of life.

3. Eating and drinking less

Have you ever had an older pet that stopped eating and drinking? Similarly, human beings also have a sense of when the body is letting go. Whether because of disease, diminished mental capacity, or simply old age, loved ones typically tend to eat and drink less when their time gets closer. They also tend to lose weight and experience changes in their body composition during this time. If you see this occurring, it may be time to consider asking hospice care to help.

4. Unable to perform daily tasks

When a loved one is unable to care for themselves, especially if they live alone, it may be time to consider hospice care. Everyday tasks such as eating, getting dressed, walking around, using the restroom, maintaining personal hygiene, and more become very difficult as health deteriorates.

Talk to a doctor to have your loved one’s health assessed, and with approval, you can look into your care options. A hospice care professional can make sure that your loved one has all the assistance needed, while maintaining their dignity and making everyone feel as comfortable as possible.

5. Displaying unusual or abnormal behavior

It can be emotionally distressing to see a loved one go through sickness and enter the final stage of life. Not only do you see the sudden physical changes, you also witness changes in their behavior and actions, such as changes in how they interact with friends and family.

Many loved ones who are in hospice care often make statements and requests that seem out of character. They might also begin to give away their personal belongings on a whim. Another sign to keep in mind is if your loved one is making apologies or saying goodbye. Ideally, a person will already be receiving hospice care by this point, but if not, it’s okay. There is certainly still time to request it.

6. Feeling stressed and overwhelmed as a senior caretaker

Being a caretaker is a serious commitment. While you may want to commit to caring for your loved one, which is admirable, it can be stressful to take on that responsibility and maintain the other parts of your life. Choosing hospice care for your loved one is not a selfish decision, but an act of love. It’s giving them the care they need and deserve, just as they loved and cared for you.

In some ways, deciding to enroll in end-of-life care may feel like you’re giving up or that you’ve stopped caring. That couldn’t be further from the truth. Enrolling in end-of-life care is about making your loved one’s life more comfortable. It’s about doing everything possible to ease their pain and make life better.

What’s Next?

If your loved one is exhibiting any of these signs (or many of them), the first step is to get them an appointment with a doctor. It could be that something else is wrong, and it’s better to catch it early. However, if the doctor does determine that the end of life is near, you can request hospice care assistance.

With the help of a trained end-of-life care professional by your side, you and your family can cherish your loved one’s final days to the fullest and offer each other loving support during a trying time.

Caring for a terminally ill loved one is often equal parts rewarding and exhausting – physically, mentally, and emotionally. There are some amazing days where you make meaningful memories that will last a lifetime. Other days challenge you to the end of your endurance. To help caregivers stay balanced and prevent caregiver burnout, respite care is available to help.

What is Respite Care?

Respite care is short-term, in-patient care, designed to give family caregivers an occasional break to re-charge and rejuvenate. In many cases, Medicare benefits pay for patient transport and up to five (5) consecutive days of in-patient care at a Medicare-approved nursing home, hospital, or hospice facility. You can use respite care more than once, but only once during each benefit period. In case the term “benefit period” is unfamiliar, it refers to a 90-day period of care that your loved one can receive before they must re-certify that they are still eligible for hospice care.

Also, while many insurances (including Medicare) help cover this type of care, there may be a minimal cost to the family. Check with your insurance provider before entering into respite care.

Why Would I Request Respite Care?

Being a primary caregiver is an admirable undertaking. Caregiving takes strength, patience, and perseverance. It is not an easy task, and the demands on your time can pile up quickly.

With the challenges of caregiving, you might request respite care for many reasons, including:

Taking a Break

Caring for a dying loved one requires a lot of time, energy, and commitment. Over time, you may begin to experience “caregiver burnout” – physical and emotional exhaustion. With respite care, you can take a few days off to re-charge and care for yourself. This break provides an opportunity to rest and relax without worrying about the level of care your terminally ill loved one is receiving.

Focusing on Personal Health

Caregivers often neglect their own needs and are continuously giving their time, energy, and effort to caring for their dying loved one. Unfortunately, it’s not uncommon for family caregivers to experience depression, insomnia, changes in appetite, or become more susceptible to illness. Respite care gives you an opportunity to focus on your own health and wellness, so that you can come back with renewed energy.

Recovering from an Illness

Though this reason is similar to focusing on personal health, it’s more focused on sickness. If you catch a cold, the flu, or some other transmittable sickness, you definitely don’t want to pass that illness on to your terminally ill loved one. With respite care, you can take a few days to recover from your own sickness before returning to care for a loved one.

Attending Important Events

Life keeps moving forward, even when someone you love is dying. That means, there may still be weddings, graduations, or other events that you must attend. With respite care, caregivers can take a few days to attend these events without worrying about medical care.

Getting Increased Care for Your Loved One

Throughout the hospice journey, your loved one will experience ups and downs with their health. There will be times when their pain and symptom management is too much for you to handle on your own at home. During these times, you can request in-patient care where your loved one can receive the medical care they need for more severe symptoms.

Now that we’ve discussed a few reasons why you might request respite care, let’s talk about the benefits.

How Does the Caregiver Benefit from Respite Care?

For those who still aren’t sure about taking time away from a loved one, here are some of the biggest benefits caregivers see when they take advantage of respite care.

• Improved sleep
• Increased energy
• Improved outlook
• Reduced levels of stress and anxiety

Requesting respite care may feel like claiming a weakness or demonstrating that you don’t have what it takes to care for a loved one, but that couldn’t be further from the truth. The reality is – what you’re doing is hard and exhausting. Knowing your limits and taking time to care for yourself is a good thing. It will give you the energy you need to provide better quality care for your loved one and be at your best when they need you most.

How Does the Patient Benefit from Respite Care?

While respite care may seem like it mostly benefits the caregiver, there are also many benefits to the patient, including:

• Reduced guilt over their caregiver’s stress or anxiety; glad to give their caregiver a break
• Increased social interaction opportunities
• Improved relationship to caregiver; stress affects both the caregiver and the patient

It’s beautiful and good to receive care at home from a loved one, but at times, everyone needs a break. With respite care, both caregiver and patient can come back together more refreshed.

How Often Can I Request Respite Care?

With hospice care, there are benefit periods, and you can request this type of care once per benefit period. Under special circumstances, you might be able to receive additional respite care, but you will likely need supporting documentation to ensure the request is valid.

Every caregiver’s life comes with its challenges. If you just can’t provide the at-home care necessary for a dying loved one, consider looking into another living situation. Perhaps a different family member can step in to assist or you can look into care at a hospice facility or nursing home. To learn more about the options, go to “4 Places Where You Can Receive Hospice Care.”

But remember – to the hospice team, your loved one’s wishes always come first and supersede anything else. Be sure to discuss the options with your loved one before talking to the hospice team about any changes in location of care.

How Do I Request Respite Care?

If you’d like to request care, the best thing to do is talk to your hospice care team. They will help you prearrange dates for respite care and ensure that all the details are taken care of. If you aren’t sure when it would be a good time to be away, the hospice team can assess your loved one’s medical situation and give you guidance on timing.

Now that you understand the value of respite care – to both the caregiver and the patient – don’t be afraid to use this beneficial service for your well-being.

If you or a loved one have been dealing with an illness for a while, the words “hospice care” may strike your heart with fear and sadness. You may feel overwhelmed or out of your element as you hear new terms and definitions, but that’s okay. Take a deep breath. You will learn what you need to know.

To help you get started, we’re going to discuss the four main places hospice care is provided, so you know what the options are and can discuss them with your hospice care team.

The Purpose of Hospice Care

Before we begin, it’s important to realize that the hospice team is designed to support and guide the family as they care for a loved one during his or her final days. Family members (and friends) are the main source of care for the patient at home, but the hospice staff is available to help with additional care needs, including pain management and symptom relief. The ultimate goal of hospice care is to allow a person to die comfortably and with dignity at home, surrounded by people they love.

Now, let’s get started.

4 Places Where You Can Receive Hospice Care

Every hospice program is designed to give you access to a team of care professionals 24 hours a day, 7 days a week, no matter where that care is provided.

In general, care is provided at your “home,” wherever that home may be. However, as your specific needs and the severity of symptoms change, the place of care may change as well. Your hospice care team can help you determine which place may be the best option for your current health situation.

To learn more about the four levels of care that hospice provides and how each level may affect where you or a loved one receive care, make sure to read “Do You Know the Four Levels of Hospice Care?”

With that said, let’s talk about where you can receive hospice care.

1. At a Personal Residence

The most common place to receive hospice care is at a personal residence. This may mean a house, apartment, duplex, townhome, condo, etc. The hospice care team – made up of medical professionals, aides, and volunteers – will drop by for scheduled visits to check on the patient’s condition.

Most often, the hospice care team does not provide around-the-clock supervision – that responsibility falls on the family – but when needed, a hospice care member may stay for longer visits or even overnight.

2. At an Assisted Living or Nursing Home Facility

For some people, home may be an assisted living facility or nursing home. In this case, the facility may have specially trained nursing staff to care for hospice patients. Alternatively, they might decide to partner with a hospice provider in the area. For terminally ill patients who don’t have someone to care for them at home, an assisted living or nursing home facility is a good option.

A Quick Note Before We Move On

With hospice care, the primary goal is to allow a person to receive care in their own home. However, there are times when care at home isn’t enough. For these cases, you can receive hospice care at the following places instead.

 3. At an Independent Hospice Facility

In some cases, your hospice provider may have its own independent facility or “hospice house.” With its home-like atmosphere, a hospice house provides a comfortable place for in-patient, short-term stays when a patient needs around-the-clock care and supervision.

For the most part, a patient may stay at a hospice house if their symptoms have worsened and cannot be managed at home or they have requested respite care to give family members a break.

4. At the Hospital

At times, it may be necessary to receive hospice care while at the hospital. Depending on how the hospital has it set up, the patient may receive care:

• In a special hospice unit
• From a hospice team that visits patients on any nursing unit, or
• The medical staff at the patient’s current unit will act as the hospice team

Like a hospice house, there are two main reasons a person may receive hospice care at a hospital.

• Either pain and symptoms have progressed to the point of becoming unmanageable at home, or
• The family has coordinated respite care for a few days

The patient will return to at-home hospice care after respite care is complete or they feel comfortable enough to return home.

Remember…

Remember that you should always consult your insurance provider before making a change to the place of care. Most hospice benefits do not usually cover the cost of housing a patient in a nursing home or assisted living facility (also known as daily room and board costs), but these costs may be covered by traditional Medicare benefits or other benefits you have.

Hopefully you now have a better understanding of your options and can confidently converse with your hospice care team about your needs as they change.

On the hospice journey, every person’s life situation and illness are different. One person may have a large family that will split care duties, while another person may have one child and a close friend available to help. For one person, a terminal illness may manifest quickly while the same illness takes longer in another person.

Because situations are varied and could change at any time, Medicare (which covers the largest majority of hospice care expenses) requires that hospice care providers offer four levels of service. You may start the day at one level and be at another level later in the day as needs change, and that’s okay. Hospice programs are equipped to pivot and adjust quickly as things change.

Today, we’ll review the four levels (or “kinds”) of hospice care that are available to families.

1. Routine or Intermittent Home Care

More than likely, it is routine or intermittent home care that comes to mind when you think of hospice. With this level of care, nurses, aides, or therapists stop by the home for short, regularly scheduled visits. These visits are focused on pain management, symptom management, emotional and spiritual counseling for the patient and family, assistance with daily tasks, nutritional services, and therapeutic services.

Routine care takes place wherever the patient calls home. This could mean a residence, a skilled nursing facility, or an assisted living facility, to name a few options. Also, while visits are routine, if your family needs additional help, there’s a nurse on-call 24 hours a day.

2. Continuous Care

With continuous care (or crisis care), a hospice patient will receive nursing assistance for several hours at a time, or even overnight, during a time of medical crisis or intense symptoms. If the patient’s symptoms are severe, they will need more focused and frequent care, so the hospice worker will stay for longer periods of time.

If death is imminent, the hospice nurse may stay overnight or offer whatever support they can to the family. This type of round-the-clock nursing allows family caregivers the opportunity to step back from hands-on care and focus on simply being with their loved one.

3. In-patient Care

While it’s most common to receive hospice care at home, sometimes home nursing isn’t enough. If symptoms intensify or it’s become impossible to manage pain or symptoms at home, a hospice patient may receive in-patient care at a hospital, nursing home of their choice, or independent hospice facility (also called a “hospice house”).

The goal of in-patient care is to help a patient become stable enough that they can return home again. However, in some cases, the person chooses to spend their final days at the in-patient care facility rather than return home.

If the medical need that leads to in-patient care is related to a hospice diagnosis, your insurance’s hospice benefit will likely continue to pay the bills. With an unrelated medical issue, contact your insurance company to discuss what’s covered in your policy.

4. Respite Care

For caregiving family members, a terminally ill loved one’s physical needs can be demanding. To give family caregivers an occasional break, hospice providers offer in-patient respite care.

With respite care, the hospice patient is checked into a 24-hour personal care home. While there, the patient will receive round-the-clock care for up to 5 days. After 5 days, the patient returns home to receive either routine care or continuous care (as needed).

Though this level of care isn’t necessary for every family, it is available and covered by Medicare. Also, if your family needs respite care more than once, that’s fine, too. Just coordinate with your hospice team.

Who Determines Which Level of Care is Appropriate?

When you start using the services of a hospice provider, the hospice physician and nursing team will complete an assessment to determine which level of care is appropriate at that time. As symptoms change, the hospice medical personnel can keep tabs on the hospice patient’s status. They can adjust levels of care as needed.

However, don’t think you have to wait on the doctors to take notice. If you see a need to update your level of care, don’t be afraid to ask. Be proactive and talk to your hospice team about updating your care routine.

If you have more questions about the four levels, contact a local hospice provider and start getting answers. While there may be four “levels,” the best part is that no matter which level of care you or a loved one receive, the hospice philosophy will not change: to provide expert medical care and emotional support that respects the unique wishes of the patient. From the moment you begin a hospice care program, your family will be in good hands.

If you or a loved one have recently entered hospice care, all of the jargon and terminology may feel daunting and foreign. For many people, two terms that often become confusing are palliative care and hospice care. Today, let’s break these two terms down so that you feel more comfortable and knowledgeable. After all, understanding what’s going on around you can help create a little bit of control in an uncertain situation. 

What is Palliative Care?

First, let’s talk about palliative care and get a sense of what it provides.  

Definition

In short, palliative care refers to the day-to-day care and emotional support provided to someone with a life-threatening illness as doctors pursue a cure (age doesn’t matter). In other words, curative treatments and palliative care occur simultaneously.  

For example, a person dealing with a stage 4 cancer diagnosis will receive palliative care as they go through the treatments prescribed by their doctor. Palliative care begins with a diagnosis and only ends when 1) the person gets well or 2) it becomes clear that the person isn’t going to survive their illness.

Who provides palliative care?

The primary care physician oversees palliative care. When a person begins to receive care, a team is assigned to them. This team will work with the patient and their family to provide medical, emotional, physical, social, and practical support.  

The palliative care team is made up of doctors, nurses, social workers, nutritionists, and chaplains (based on the patient’s needs). Each member of the team focuses on different aspects of the patient’s overall well-being and care.   

What is the purpose of palliative care?

Some illnesses and treatment plans take a harder toll on the body. Palliative care seeks to enhance a person’s life by focusing on quality of life – for both the patient and their family.  

Not only does palliative care focus on easing symptoms, the palliative care team also desires to help patients understand their treatment options so they can make the choices most appropriate for their specific needs.  

Where can a person receive palliative care and is it covered by insurance?

Thankfully, palliative care is available at many different types of facilities. You can receive it at hospitals, nursing homes, outpatient palliative care or specialized care clinics, or even at home.  

As for insurance, it’s best to check with your insurance provider, though many plans do include some form of coverage. If you are a veteran, check with the Department of Veterans Affairs to see if they might cover palliative care.  

How do I request palliative care? 

If you think palliative care is the best next step, your primary care physician can refer you to a palliative care specialist. However, if your doctor doesn’t mention it on their own, don’t be afraid to ask!  

What is Hospice Care?

Now that you have a better understanding of palliative care, let’s compare it to hospice care. 

Definition

Hospice care refers to the care provided to those who have received a terminal diagnosis (often with a prognosis of six months or less). However, an illness’s timeline can change so it’s possible to receive hospice care for longer than six months, if needed. Hospice care focuses on pain and symptom management since patients in hospice care are no longer seeking a cure.  

Who provides hospice care?

Similar to palliative care, patients are provided with a hospice care team made up of doctors, nurses, social workers, nutritionists, volunteers, and chaplains (as needed) that provide a variety of services. However, hospice care is overseen by the hospice medical director rather than the person’s primary care physician. 

Regardless, everyone works together to ensure that both the patient and their family are receiving the holistic care they need. The team will visit regularly and is available by phone.  

What is the purpose of hospice care?

Hospice care seeks to provide care, comfort, and quality of life to the person who is dying. At this point, the patient understands that their body is no longer responding to medical treatments. The hospice care team steps in to offer comprehensive care for medical, physical, practical, and spiritual needs.  

Additionally, the hospice care team provides much-needed assistance to family members and friends as they grapple with the day-to-day demands of caring for a loved one with a terminal illness.  

Where can a person receive hospice care and is it covered by insurance?

In most cases, hospice care is received at the home, but it is also available at assisted living and nursing home facilities, hospitals, and hospice centers.  

Both Medicaid and Medicare offer coverage for hospice care (as do most other insurance companies), but you will need to call to get the specifics of your particular plan. Again, if you are a veteran, don’t forget to check with the VA. 

How do I request hospice care?

If you confer with your doctor and decide not to pursue life-saving treatments, you can start talking about hospice care. Most often, the doctor will bring it up, but if not, ask. There are some minimal eligibility requirements you can read about here.  

Let’s Recap

As you can see, hospice care and palliative care are quite similar. Both involve putting together a team of qualified professionals to assist a patient and their family medically, emotionally, physically, spiritually, and practically. Both involve easing pain and symptoms related to a life-threatening condition.  

The main difference between the two relates to ongoing curative treatment. With palliative care, the patient is still actively seeking a cure, while those in hospice care have exhausted all curative options and are focusing on quality of life. 

With these terms defined, hopefully you will feel empowered to ask for what you need when you need it. After all, both palliative care and hospice care options are available and will offer caring support during a difficult season of life.   

If you or a loved one have received a terminal diagnosis or have experienced a sudden decline in health, your entire family is probably feeling sad, stressed, and emotionally drained. To help you through this difficult season of emotional ups and downs, hospice care may be just what your family needs. But what are the eligibility requirements? Who qualifies and how? Let’s take a deeper look.

Two Basic Eligibility Requirements

1. Certification of Illness

A person is eligible for hospice if they have been diagnosed with a terminal illness and given less than six months to live. The primary physician and the hospice’s medical director will discuss the person’s illness and certify that the person has six months or less to live.

When determining eligibility and certifying illness, the primary physician and hospice medical director often look for three indicators: 1) a patient’s lack of improvement despite treatment, 2) a patient’s goal becomes comfort rather than cure, and 3) acute health events, like heart attack or stroke.

Some common health symptoms that indicate a patient may qualify for hospice are:

• Frequent hospitalizations in the past six months
• Significant weight loss (10% or more) within the past 3-6 months
• A change in mental, cognitive, and functional abilities
• Increasing weakness and fatigue
• Decreasing appetite or trouble swallowing
• Inability to complete daily tasks, like eating, bathing, dressing, walking, etc.
• Recurring infections or increasing pain
• Insufficient hydration or nutrition
• A desire to stop treatment or to not go to the hospital

With some illnesses, often those that are long-term, the primary physician and hospice medical director will look for specific symptoms to help them determine if an illness has reached an end stage. This includes illnesses like ALS, Alzheimer’s and dementia, lung, heart, or liver disease, HIV/AIDS, cancer, neurological conditions, sepsis, and renal failure.

Let’s move on to the second eligibility requirement.

2. Focus on Comfort Rather than Cure

After an illness has been certified, there is one more eligibility requirement. Before a hospice care team can step in and begin to help the family, the terminally ill person must state that it is their intention to seek palliative care instead of curative care. This means that all care will now focus on improving quality of life and relieving pain rather than on life-prolonging treatments.

However, please note that you can stop hospice care at any time. If life expectancy improves or new treatments become available, you can stop hospice care and focus on curative care.

Alternatively, if hospice care isn’t working out for your family for whatever reason, you can stop it and do something else that may work better for your particular situation. If you need to re-enter hospice care at a later date, you can do so after the illness is re-certified.

Once your eligibility is confirmed, you can begin receiving services from your hospice care team. Care usually takes place at your home, but your insurance may cover other options so make sure to ask. To learn more about the basic services available to you through hospice, click here.

What if You Need Hospice Care for Longer than 6 Months?

Great question. Doctors don’t know exactly how an illness will affect each person individually. Because of this, a prognosis of six months may turn into a longer period of time. Hospice prepares for that.

Hospice care breaks up into benefit periods. You can receive hospice care for two 90-day periods, followed by an unlimited number of 60-day periods. However, at the end of every benefit period, doctors will reassess and recertify that hospice care is still needed.

If the end of a benefit period is approaching, start the reapplication process 30 days before the next period is set to begin. That will give you time to get everything approved, ensuring there is no lapse in care.

Now that you better understand how hospice eligibility works, your next step is to talk with your own or your loved one’s primary physician to determine next steps.

Please NOTE: These eligibility requirements are based on Medicare’s Hospice Benefit. Medicare pays for more than 85% of all hospice fees in the United States. If you have a different health insurance provider, call to ensure they don’t have additional eligibility requirements.

If you have a loved one who has been diagnosed with a terminal illness, you may feel a little out of your element as you look into hospice care. One of the big questions on your mind may be, “What exactly does hospice do? What kind of services do they offer?” Today, we’ll take a look at the variety of standard offerings available through hospice and how they benefit your family.

Before we get started, it’s always helpful to have a definition of hospice care. At its core, hospice care is about taking care of patients and their families with kindness and compassion. It focuses on creating a comfortable, pain-free environment for the terminally ill, making each person feel confident that they know what to expect, and offering supportive care to family members.

First Things First

Once a terminally ill person enrolls in hospice care, they will begin receiving visits from their hospice care team. This team can include a wide variety of people, depending on the hospice services your family pursues.

The team could include a nurse, hospice aide, social worker, chaplain, bereavement coordinator, physical, occupational, speech, or dietary therapists, spiritual and/or grief counselors, and volunteers – all overseen by the hospice medical director.

However, the services your family receives will depend on your specific needs. Adjustments are made to accommodate each individual patient and their family. So, if you don’t want or need a dietary therapist right now, you don’t have to have one. But if your needs change, you can always request a dietary therapist later. Hospice care is very personalized and can be tailored to fit a family’s specific needs over the duration of a person’s terminal illness.

7 Basic Hospice Services

The most common way to pay for hospice is with Medicare (85.4%), followed by private insurance (6.9%), Medicaid (5%), and other options, including self-pay (2.7%). Because Medicare is used most often to pay for hospice, its benefit rules are used by Medicaid and other insurance plans as a base line. In other words, other insurance companies base their hospice benefit plans on Medicare.

That’s not to say there aren’t differences, but by reviewing Medicare’s hospice benefit policy, we can get a good look at what services are most commonly available across the country. NOTE: Some hospice providers will include their own personalized services in addition to these basic services, so make sure to ask if there are any additional services available.

1. Personal & Medical Care

Of course, every hospice patient will receive medical care. However, it’s important to understand that this is not curative care. Instead, it’s focused on managing pain and symptoms so that a hospice patient’s final days are as comfortable as possible. This includes services from doctors and nurses as well as prescription medication.

The hospice care team will closely monitor the hospice patient’s needs and create a treatment plan that meets both your end-of-life care preferences and provides optimal comfort.

2. Medical Supplies & Equipment

Secondly, hospice will provide medical supplies and equipment that may be necessary for pain relief and symptom management. This could include a walker, wheelchair, oxygen tank, hospital bed, bandages, catheter, bedpan, wound care supplies, and much more.

The hospice care team will arrange for both the delivery and removal of all such items. If there is something you need, communicate that to the care team, and they will work with you to ensure that the hospice patient’s needs are met.

3. Therapy & Nutrition

While it may not come to mind at first, hospice will coordinate physical therapy, occupational therapy, speech therapy, and even dietary counseling. If these services are deemed medically necessary by the hospice medical director, then they will be provided to the hospice patient. For example, if a person has trouble swallowing, speech therapy can help.

As for nutritional care, as the hospice patient’s body begins the dying process, they may not be able to process as many calories, digest properly, or process food or drink at all. With dietary counseling, family members are given the information needed to know when and how to make adjustments to diet and ensure that a loved one’s food intake is correct.

4. Assistance at Home

As the hospice patient’s illness progresses, it will become even harder to take care of daily tasks. That’s why the hospice team is also available to help with eating, toileting, bathing, dressing, changing bed sheets, and more. The team’s highly trained nurses or aides will perform these tasks with care, discretion, and dignity. Plus, by doing these things, the hospice care team allows the family caregiver to take a break.

Talk with your hospice care team to find out what kind of at-home assistance they offer and request what best fits your needs.

5. Social Work Services

Here’s one you may not have heard about – social work services. You will have a hospice social worker assigned to you who will provide support by connecting the family to additional financial support programs or psychosocial support available in the community.

Some common social work services include:

• Providing information about grief counseling and coping skills
• Assisting with funeral or memorial preparations
• Coordinating care
• Helping families navigate the hospice care system
• Advocating on the family’s behalf
• Assisting survivors with arrangements and paperwork

Basically, the hospice social worker is there to guide your family through the hospice care process from beginning to end. Think of them as an incredible resource for questions and solutions.

6. Counseling

Another big part of hospice care revolves around counseling, both for the hospice patient and their family. This could include emotional and spiritual counseling, grief counseling, and psychosocial counseling.

Spiritual & emotional counseling – There are skilled counselors available to help each person in the family achieve peace in their heart and spirit prior to the death. For some, this may mean seeking to restore broken relationships, mend hurt feelings, or draw closer to loved ones.

Grief counseling – After a terminal diagnosis, everyone knows that death will come sometime in the near future, and with death, comes grief. To support families through the ups and downs of grief, hospice makes grief counselors available to provide comfort, both before and after the loss of a loved one.

Psychosocial counseling – Receiving a terminal diagnosis takes a heavy toll, often bringing out depression or severe anxiety. Psychosocial counselors seek to help the hospice patient understand the end-of-life process and work toward social and emotional restoration.

7. Respite Care

One final service to review is respite care. Every family will have a primary caregiver, and it can be an exhausting role. To give family caregivers a much-needed, occasional break, the hospice care team will provide respite care.

Most often, this means that the hospice patient will be placed in an in-patient facility for a few days, giving both the caregiver and the hospice patient a break. If this is something your family caregiver needs, contact your social worker, who can arrange this for you. You can get respite care more than once, but only on an occasional basis.

These are the basic services you can expect to receive from a hospice provider. Of course, don’t forget to ask if your specific hospice provider includes additional benefits. As you walk down this road, remember that you aren’t alone. There’s an entire team of people waiting to help you through it.

Learning that a member of your family has a terminal illness is often the most devastating news a family can receive. Your family is starting a journey they didn’t ask for and don’t want – with hospital visits, hospice care, grief, sorrow, and tears. But it doesn’t have to only be rainy days! You can create beautiful memories to cherish and turn your love and concern into positive actions. Together, let’s discuss ways you can help your family process what’s happening and grieve well together.

1. Take Time to Accept What’s Happened

It’s going to take time to cope with your family’s new reality. Before the diagnosis, you may have thought this type of thing only happens to other families, and it’s hard to grasp that it’s now happening to yours. If the onset of the terminal illness was sudden or unexpected, you and the rest of your family will likely feel shock and numbness at first. This is a natural and necessary response to painful news.

Don’t try to take it all in at once. Accept your new reality in doses or increments. First, try to understand it in your head. Then, over the weeks and even months to come, you will come to understand it with your heart. Just take it one day at a time.

2. Be Aware of Your Family’s Coping Style

How you and your family respond to this terminal illness will have a lot to do with how you as a family have related in the past. If your family is used to openly talking about their feelings with each other, they will probably be able to communicate more easily about the illness and the changes it brings. Families where people don’t talk about feelings and tend to deal with problems individually will probably have difficulty acknowledging the illness and its impact.

As you have conversations, you will find that some family members want to discuss the terminal illness, while others seem to want to deny the reality and refuse to discuss it. Right now, your family may feel like a pressure cooker: you all have a high need to feel understood, but little capacity to be understanding. Try not to force anything and give each family member room to come to grips with reality in their own way.

3. Adjust to Changing Roles

A family member’s terminal illness is going to necessitate changes – in routine, in roles and responsibilities, activities, and more. Your family may have a hard time adjusting to the changing roles. For example, if the head of the household is dying, the other spouse may now have to find a job in addition to caring for the home and children. If grandma acted as the family’s binding force before she was ill, her family may now feel confused and disjointed where they once felt strong and cohesive.

These changes can cause upheaval and high emotions, affecting how your family interacts. Depending on temperament and age, some may act short-tempered, overly dependent, or stoic, to name a few options for altered behavior. Each person’s stress, anxiety, or fear will manifest in different ways, so be on the lookout for it. Try not to take any outbursts personally.

4. Consider Getting Outside Help

One of the most compassionate things you can do for your family during this stressful time is to reach out for and accept help. If someone in your family is caring for the dying person at home, look into end-of-life care options. Have groceries delivered. Hire a housekeeper to come in twice a month. Talk to your church or other community organizations and ask for volunteers to help. And family counseling can be a healing, enriching experience that helps family members understand one another now and long after the illness.

Additionally, hospices are well-staffed and trained to help both the dying person and the dying person’s family. Their mission is two-fold: 1) to help the dying die with comfort, dignity, and love, and 2) to help survivors cope both before and after the death. Contact your local hospice early in the dying process. Too often families wait until the last few days of the sick person’s life to ask for hospice care. When contacted early, hospices can provide a great deal of compassionate support and care up to six months before the death.

5. Understand What the Dying Person May be Feeling

Experiencing terminal illness affects a person’s mind, heart, and spirit. While you don’t want to make assumptions about what another person may feel, do be aware that terminally ill people may experience a variety of emotions. Fear, anxiety, anger, guilt, sadness, and loneliness are just a few of the emotions they may feel—one at a time or simultaneously.

These feelings are a natural response to terminal illness. Your role as caring family member should be to listen to the sick person’s thoughts and feelings without trying to change them. If they are sad, they’re sad. Don’t try to take that necessary emotion away. If they are angry or feeling guilty, that’s okay too. You may be tempted to soothe away or deny these painful feelings, but a more helpful response is to simply acknowledge them. Listen and understand.

6. Help Family Members Tend to their Own Needs

When a family member is dying, that person becomes the focal point for the entire family. Suddenly everyone is concerned about that one person and their coming death. This is normal, but family members should not lose sight of their own needs during this difficult time.

Encourage everyone to nurture themselves as well as the sick person. Get enough rest. Eat balanced meals. Lighten schedules as much as possible. And even though the family is experiencing a serious time, they should still give themselves permission to be happy. Plan fun events. Allow time to laugh, love, and enjoy life.

7. Embrace Your Spirituality

If faith is part of your family’s life, express it in ways that seem appropriate to you. Singly or together, you may find comfort and hope in reading spiritual texts, attending religious services, or praying. Allow yourselves to be around people who understand and support your religious beliefs. If one or more family members are angry at God because of the illness, realize that this is a normal and natural response. Try not to be critical of whatever thoughts and feelings each family member needs to explore.

8. Seek Hope and Healing

When a family member dies, each surviving member of the family must find a way to mourn if they are to love and live wholly again. It’s impossible to heal if you aren’t willing to openly express grief. Denying your grief, before and after the death, will only make it more confusing and overwhelming.

Remember, every family member will grieve in a different way. Leave room for different expressions of grief. Some will feel sad, others angry, guilty, or even relieved. Don’t judge the reactions of the other people in your family – simply realize that each of you will face the pain differently. Look for ways to honor and remember the person you’ve lost. These healing actions will help you find a way to move forward.

Reconciling your grief will not happen quickly. Grief is a process, not an event. Encourage your family to be patient with each other and kind to themselves. Your life as a family has changed forever, and it will take time, open sharing, and intentionality to discover the way forward.