Facing the reality of a terminal illness for a loved one can be overwhelming – both emotionally and logistically. Knowing what to expect from hospice care at home can provide comfort and confidence in making the best decisions for your loved one and family. This guide outlines the process of hospice care, the support available and how to create a peaceful environment.
Understanding Hospice Care
Hospice care is supportive care with the main goals of comfort and quality of life for patients with a terminal illness. Terminal illness means a life expectancy of six months or less, as certified by a physician. Hospice is a holistic approach to care, addressing the patient’s medical needs and the emotional, psychosocial and spiritual needs of the patient and caregiver by an interdisciplinary team of caregivers.
Every patient is unique. Each hospice plan of care is tailored to their wishes and goals, ensuring their final days are spent on their terms, surrounded by loved ones, in comfort wherever they call home.
What is the Timeline for Hospice Care at Home?
With hospice care, every moment matters. Hospice companies like Amedisys can move quickly to guide patients and families through the process to begin hospice care as soon as possible.
Determining Eligibility
The first step in the hospice journey is determining whether your loved one is eligible for the Medicare hospice benefit. The physician will determine eligibility using these criteria:
- Diagnosed with a terminal illness, with six months or less to live if the disease runs its normal course
- Patient is prepared to stop curative treatments and focus on improving comfort and quality of life
Inquiry and Referral
Once you and your family have determined that hospice may be the answer, you can either begin with a direct inquiry to a hospice agency or through your loved one’s physician. Typically, the hospice agency will arrange an in-person, informational meeting to answer any questions about care, discuss any concerns and understand goals of care.
Admission
A registered nurse will visit the prospective patient to assess the patient and needs for medical equipment, supplies and medication. If the physician determines the patient is eligible for hospice care, the nurse will admit to hospice and work with the larger team, including the hospice physician, to develop an individualized plan of care.
Continuing Care
The full hospice team conducts visits wherever the patient calls home based on the plan of care, focusing on quality of life and pain and symptom management, while providing resources and education to caregivers.
Final Days
When the end is near, hospice teams provide increased comfort and support, and help loved ones with final arrangements. Amedisys has a specific protocol for the end of life to activate an increased frequency of visits from clinicians so no patient transitions alone.
Who is on the Hospice Care Team?
While exact services depend on each patient’s plan of care and preferences, all patients have access to a wide range of services.
This includes nurses with training in pain and symptom management, hospice aides for activities of daily living support and companionship, social workers to help with end-of-life planning, direct counseling or referrals to community resources, chaplains for spiritual needs, hospice volunteers for companionship and bereavement counselors for the patient and family before and after the patient’s death.
Creating a Comfortable, Peaceful Home Environment
Preparing your loved one’s home for hospice care is an important step in ensuring comfort, peace and safety for your loved one. Here are some key considerations to help you create an optimal environment:
Designate an Appropriate Bedroom
Choose a room that is accessible and comfortable for your loved one. Ideally, this space should be easy to navigate and located near a bathroom or equipped with a bedside commode if mobility is limited. In some instances, families may choose to convert a non-bedroom ground-floor room into a comfortable space. Natural light and personal touches, such as family photos or meaningful items, can enhance the atmosphere and provide emotional comfort.
Ensure Safety and Accessibility
The hospice team will evaluate the home for safety and may recommend adjustments to help prevent falls. Clear pathways of clutter and remove tripping hazards like loose rugs or cords. If your loved one requires mobility aids, such as a wheelchair or walker, ensure there’s adequate space to maneuver. Consider installing grab bars in the bathroom and providing a sturdy shower chair with arms to assist with sitting and standing.
Prepare for Medical Equipment
Depending on the patient’s plan of care, there may be medical equipment delivered to the home like a hospital bed, oxygen tank or other necessary devices. The hospice team will work with you to arrange delivery and setup of this equipment and conduct any necessary training.
Create a Calming Atmosphere
A peaceful environment can promote relaxation and well-being. Consider playing soft music, using aromatherapy with calming scents like lavender and maintaining a quiet setting free from excessive noise or distractions. Soft lighting and comfortable and familiar bedding can also contribute to a soothing space.
Managing Pain and Symptoms at Home
Effectively managing pain and symptoms relating to the patient’s terminal diagnosis is a central goal of hospice care. The hospice team can provide education on medication regimens and non-medication tactics based on the patient’s goals and plan of care.
Controlling pain and other symptoms helps patients live their final days on their own terms, boosting their mood and activity tolerance, avoiding unnecessary emergency room visits and helping to reduce caregiver stress.
Is Hospice Available Only at Home?
Hospice care can be delivered wherever the patient calls home, including nursing homes or assisted living facilities. Just like at home, personal touches, such as family photos or meaningful items, can enhance the atmosphere and provide emotional comfort.
There may also be situations when the hospice team determines that a patient’s symptoms can’t be effectively managed at home, requiring a move to an inpatient facility.
This is a higher level of hospice care called General Inpatient care. The hospice team remains engaged in the plan of care, visits patient daily, coordinates care with facility staff, and coordinates the transition to the facility and back home when appropriate.
Caring for Spiritual and Emotional Well-Being
Hospice care is a holistic, interdisciplinary service, caring for patients’ and families’ emotional, psychosocial and spiritual needs alongside the physical. Facing the end of life can induce fear, grief and uncertainty, so it’s essential to create a space where your loved one feels emotionally supported and spiritually fulfilled to bring them peace and comfort.
A powerful way to support your loved one is by encouraging meaningful conversations if possible, having them reminisce on special memories or express any fears or concerns. The social worker on the hospice team can help facilitate these conversations.
Hospice offers spiritual care services as well through chaplains and access to community services, regardless of any religious affiliations, to help patients find peace and meaning at the end of life.
Managing Grief with Bereavement Services
Grief is a deeply personal journey for everyone involved. Hospice bereavement services help families navigate this challenging process with guidance and resources for up to 13 months after the loved one’s passing.
Hospice companies like Amedisys host grief support groups where individuals can connect with others experiencing similar losses. Sharing stories and understanding how others navigate their grief provides a sense of community and reassurance. The team can also facilitate access to one-on-one counseling sessions to those who need a more private experience.
Hospice teams also facilitate memorial services or other tributes to honor the legacy of patients, which can be a powerful step toward healing.
How to Get Started with Hospice Care
If you believe hospice is the answer for your loved one, you can complete our free online assessment, complete the form below or contact one of our locations directly.
Deb Gallaher, MSN, MBA, RN, NE-BC, CHPN, is a Senior Hospice Clinical Education Specialist for Amedisys. She has 10 years of experience in hospice and is passionate about sharing her insights on high-quality care.
