Finding Comfort and Support: Your Guide to Hospice Care

Navigating end-of-life care can be a deeply emotional and often complex journey for families, caregivers, and those facing a terminal illness. It’s completely understandable to experience a range of emotions, including hesitation or apprehension, when approaching this topic. However, engaging in open and honest conversations about end-of-life care is important, not only for fostering peace of mind and emotional well-being but also for navigating essential decisions, including those relating to financial planning and healthcare options. Thankfully, hospice care, also known as comfort care, exists to provide comprehensive support and alleviate unnecessary stress during this sensitive time.

What is Hospice?

Hospice care is a specialized type of palliative care specifically focused on comfort and symptom management for those nearing the end of life, typically with a prognosis of six months or less. While the focus shifts from curative treatments to quality of life, hospice care offers medical support to manage symptoms and maintain comfort.

Here’s what hospice care typically includes:

• Medication management: This includes medications for pain relief, symptom control, and other needs to ensure patient comfort.
• Durable medical equipment (DME): This may include equipment like oxygen tanks, hospital beds, wheelchairs, and other mobility aids as needed by the patient.
• Access to a hospice clinician: This can be a doctor, nurse practitioner, or physician assistant who is specially trained in hospice care and provides oversight and management of the patient’s care plan.
• Medical supplies: This involves providing supplies needed for care at home, such as bandages, dressings, and other necessary items.
• Personal care assistance: This can include help with activities of daily living (ADLs) like bathing, dressing, and toileting, ensuring the patient maintains their desired level of independence and dignity.

Types of Hospice Care

Hospice care generally offers four main levels of care, each aiming to provide comfort and support to patients and their families in different settings:

Routine Home Care

This is the most common type of hospice care, delivered wherever the patient calls home, such as their house, apartment, or assisted living facility. A team of qualified professionals visits the patient regularly, including nurses, home health aides, social workers, and chaplains. Family members and loved ones are often actively involved in providing support alongside the professional care team. Routine home care typically includes:

• Skilled nursing services: This may involve wound care, medication administration, and intravenous (IV) therapy, as needed.
• Personal care: Assistance with activities of daily living (ADLs) like bathing, dressing, and toileting.
• Symptom management: Medication and other interventions to manage pain, anxiety, and other symptoms.
• Equipment and supplies: Providing necessary medical equipment and supplies for at-home care.

Continuous Home Care

This level of care is necessary when a patient requires more intensive support. It becomes essential when continuous nursing care is needed for extended periods, typically exceeding 8 hours per day, in addition to their regular home care services. This type of around-the-clock care is usually provided when a patient experiences severe symptoms requiring close monitoring and management, such as uncontrolled pain or difficulty breathing.

General Inpatient Care

General inpatient care is a temporary measure recommended for short-term symptom management when managing symptoms at home becomes difficult. This type of care prioritizes providing immediate and effective support to alleviate challenging symptoms. While offered in various settings like hospice inpatient units, hospitals, or skilled nursing facilities, the primary goal is to stabilize the patient and facilitate a smooth transition back to their preferred home environment as soon as possible.

Respite Care

Respite care serves as a support system for families providing home care to loved ones during their final stages. It offers a temporary break from the demanding responsibilities of caregiving. In the context of hospice, respite care allows patients receiving most of their care at home to have a short stay in a safe and supportive environment, such as a hospital, hospice inpatient unit, or other facility. This allows the primary caregiver, often a family member, time to rest, recharge, and avoid burnout. This ensures they can return to their loved one feeling refreshed and better equipped to continue offering compassionate care.

How Long Can Someone Be in Hospice?

Hospice care is not limited to the last few days of life. While it often provides end-of-life support, it can be initiated when a patient has a prognosis of six months or less. A person can receive hospice care for an extended period; the duration depends on the progression of the illness and the patient’s response to treatment.

Hospice Eligibility and Reassessment

The initial eligibility for hospice care is determined by a doctor certifying that a patient has a prognosis of six months or less if their illness follows its natural course. However, it’s important to understand that this is an estimate, and a patient’s condition can change over time. Therefore, regular re-evaluations are common to ensure the patient continues to receive the most appropriate care.

Process of Re-evaluation

The hospice team, often including a physician, nurse, and social worker, considers various factors such as:

• Changes in the patient’s symptoms and overall health.
• The patient’s response to current treatments and the progression of the illness.
• The patient’s preferences.

Outcomes of Re-evaluation

Based on the re-evaluation, two key outcomes are possible:

1. Continued Eligibility: If a patient’s condition remains consistent with the initial prognosis and they continue to benefit from hospice care, then they can continue receiving hospice services as long as needed.
2. Discontinuing Hospice Care: If a patient’s condition stabilizes or significantly improves, then they may no longer meet hospice eligibility. In such cases, the hospice team works collaboratively with the patient, their family, and the physician to explore alternative care options.

Reasons to Discontinue Hospice Care

Patients can choose to end hospice care in several situations. Here are some reasons why hospice care may no longer be necessary:

• Improved Health: If evidence suggests a patient’s life expectancy exceeds six months, or their health significantly improves, then they might no longer meet the criteria for hospice care.
• Desire for Curative Treatments: Patients may choose to transition away from hospice if they wish to pursue curative treatments for their illness.
• Transition to Other Forms of Care: If hospice is no longer the most appropriate form of care, the patient may transition to other options like palliative care or, potentially, return to curative treatments.

Common Services Hospice Provides

Hospice care can include a wide range of supports. Here are some of the most common services you can expect.

Access to Medical Supplies and Equipment

Whether a person is receiving in-home care or inpatient hospice care, medical supplies and equipment are available. Supplies like bandages, catheters, and bedpans can be provided at no cost. Additionally, equipment like wheelchairs or even walkers may also be provided. Anything that a care team deems necessary for comfort may be included.

Medication

A person who is nearing the end of life may experience symptoms such as pain, anxiety, shortness of breath, and more. A care team will provide medication that can help alleviate (but not cure) these symptoms. Common drugs prescribed for comfort are:

• Acetaminophen
• Antidepressants
• Bisacodyl
• Haldol
• Lorazepam
• Morphine
• Trazodone
• And more.

Spiritual Counseling

It’s important to remember that hospice addresses all of a patient’s needs—not just the physical ones. In other words, emotional and spiritual needs are looked after, too! If a patient who is near the end of life wishes, hospice will provide spiritual counseling. This can include a chaplain or any other religious or spiritual leader from any faith. Spiritual counseling can help a patient and their family understand and accept their circumstances, as well as provide comfort.

Skilled Nursing

Hospice care, whether administered at home or in a facility, also includes skilled nursing services. This includes:

• Administration of medication for pain management or controlling symptoms and adjusting dosages as necessary to ensure the patient’s comfort.
• Monitoring vital signs such as blood pressure, heart rate, and temperature.
• Wound care. Healthcare professionals will make sure wounds are cleaned and dressed properly to prevent infection.

Respite Care

Respite care is a service that provides short-term relief to caregivers. When someone in hospice receives most of their care at home, that person may stay at a hospital or other facility to give their primary caregiver a break. The duration of the stay is usually a few days, or maybe just one.

How Much Does Hospice Care Cost?

While the emotional aspects of hospice care are most prominent, understanding the financial implications is important too. The good news is that most patients pay little or nothing out of pocket for hospice thanks to coverage from:

• Medicare
• Medicaid
• Private insurance: Many plans offer hospice coverage, but out-of-pocket costs might vary.

While expenses are typically minimal, some potential costs to consider include:

• Medicare Part A copay: May apply for specific medications not covered under hospice.
• Private insurance cost-sharing: Some plans may have co-pays, deductibles, or other requirements.
• Non-hospice care costs: Prescriptions not covered by hospice or long-term care services might fall outside of hospice coverage.

How Does Medicare Cover Hospice?

Medicare provides a comprehensive hospice benefit under Medicare Part A. The hospice benefit offers support and services to those with a terminal illness who have a life expectancy of six months or less. Here’s what to know about coverage:

Eligibility

To qualify for Medicare hospice benefits, a person must meet the following:

• Must be enrolled in Medicare Part A.
• Both your hospice doctor and your regular doctor must certify that you have a prognosis of six months or less.
• You must agree to palliative care instead of curative treatment.
• You must sign a statement agreeing to hospice care instead of other Medicare-covered treatments for your terminal illness.

Covered Services

Medicare hospice benefits cover a range of services, including:

• Nursing care.
• Physician services related to the patient’s terminal illness.
• Medications for pain relief and symptom management.
• Medical equipment and supplies.
• Counseling services for the patient and their family.
• Short-term inpatient care for pain and symptom management.
• Respite care that provides temporary relief for the primary caregiver.
• Dietary counseling.
• Grief counseling for loved ones.
• Social worker services.
• Hospice aide and homemaker services.

Medicare does not cover:

• Treatments intended as a cure
• Prescription drugs intended to cure
• Room and board if residing in a nursing facility

Duration of Coverage

Medicare covers hospice care for as long as a patient’s condition remains terminal and they continue to meet the eligibility criteria.

How Does Medicaid Cover Hospice?

Medicaid, the joint federal and state program that provides healthcare coverage for low-income individuals and families, includes a hospice benefit. Medicaid’s hospice benefits are similar to those that Medicare provides and offer comprehensive end-of-life care for individuals with a terminal illness.

Eligibility

Eligibility for Medicaid hospice benefits varies by state. Patients must meet both the state-specific criteria for Medicaid and the criteria for hospice care. Typically, patients must meet the following:

• Must be enrolled in Medicaid.
• A physician must certify that the patient has a prognosis of six months or less.
• The patient must fill out an election statement with their chosen hospice.
• They must acknowledge that they are revoking curative treatments and choosing hospice.
• A hospice care plan must be established before the patient can receive services (according to Medicaid.gov).

Covered Services

Medicaid hospice benefits cover a range of services, including:

• Nursing care.
• Physician services related to terminal illness.
• Medications for pain relief and symptom management.
• Medical equipment and supplies.
• Short-term inpatient care for pain and symptom management.
• Respite care.
• Chaplain support.
• Grief counseling.
• Physical, speech, and occupational therapy.
• Social worker services.
• Hospice aide services.

Duration of Coverage

Like Medicare, Medicaid covers hospice care for as long as the patient’s condition remains terminal and the individual continues to meet the eligibility criteria. A physician or doctor will continue to assess whether or not there’s an ongoing need for hospice care.

How to Choose a Hospice Care Program

Choosing the right hospice care program is an important decision, and careful consideration is crucial. Here’s how to go about making your choice:

1. Gather information and make a list of potential programs:

• Talk to your doctor or healthcare provider.
• Contact your insurance company to understand your covered options.
• Consult online resources or senior directories to explore local programs.

2. Research and compare different programs:

• Visit the program’s website or contact them directly to learn about their services, philosophy, and team members.
• Inquire about their experience and qualifications, especially in your specific needs.
• Understand their approach to pain and symptom management, emotional and spiritual support, and bereavement care.

3. Schedule visits and ask questions:

• Tour the facility if possible to get a sense of the environment and staff interaction.
• Meet with the hospice team, including the physician, nurse, social worker, and chaplain, to ask questions about their care philosophy and approach.
• Discuss your specific needs and preferences, and ensure the program aligns with your and your loved one’s expectations.

4. Consider additional factors:

• Location and accessibility: Choose a program conveniently located for you and your family to visit.
• Cost and insurance coverage: Confirm the program accepts your insurance or discuss payment options if needed.
• Religious or cultural considerations: Opt for a program that respects your or your loved one’s religious or cultural beliefs.

Remember, choosing a hospice program is a personal decision. Take your time, gather information, and ask questions to find the program that best aligns with your needs and provides the comfort and support you deserve during this challenging time.