Starting hospice care can bring a mix of emotions. For some families, there is relief in knowing more help is available. For others, there may be uncertainty about what happens next, who will come to the home, or what hospice care will look like from one day to another.
While every patient’s needs are different, the first week of hospice is generally a time for getting to know the patient and family, creating a personalized plan of care, addressing immediate comfort needs, and making sure caregivers know where to turn when questions arise.
Knowing what to expect can make this transition feel a little less overwhelming.
Hospice Care Begins With Your Priorities
One of the first goals of hospice care is understanding what matters most to the patient and family.
The hospice team will learn about the patient’s medical condition, symptoms, daily routines, concerns, and preferences. Just as importantly, they’ll talk with the patient and family about their goals for care.
Those goals may include:
- Managing pain or other uncomfortable symptoms
- Remaining at home whenever possible
- Maintaining independence for as long as possible
- Spending meaningful time with family and friends
- Reducing stressful trips to the hospital or emergency room
- Providing caregivers with additional guidance and support
Hospice care is centered around quality of life. The care plan is built around the needs and wishes of the individual rather than following a one-size-fits-all approach.
You Will Meet Members of Your Hospice Care Team
Hospice care is provided by an interdisciplinary team. During the first days of care, you may begin meeting several of the professionals who will support the patient and family.
Depending on individual needs, the hospice team may include:
- Nurses who monitor symptoms, medications, and changes in the patient’s condition
- Physicians who help oversee the medical plan of care
- Hospice aides who can assist with personal care needs
- Social workers who provide emotional support and help families navigate practical concerns and resources
- Spiritual care counselors who are available to support patients and families according to their individual beliefs and preferences
- Trained volunteers who may provide companionship and additional support
You may not meet every member of the team immediately, and not every patient will need every service. Hospice care is tailored to the individual, and the level of support can change as needs change.
The Team Will Review Medications and Symptoms
One of the most important parts of beginning hospice is making sure the patient is as comfortable as possible.
The hospice team will review current medications, discuss symptoms, and identify any immediate concerns. Symptoms may include pain, nausea, shortness of breath, anxiety, difficulty sleeping, constipation, or other discomfort related to the patient’s illness.
Medications are not automatically stopped simply because someone begins hospice care. Instead, the care team reviews medications to determine which ones continue to support the patient’s comfort and quality of life.
Families will also receive guidance about medications used to manage symptoms and what to do if the patient’s condition changes.
Medical Equipment May Be Delivered
Depending on the patient’s needs, hospice may arrange for medical equipment that makes care safer or more comfortable at home.
This might include:
- A hospital bed
- Wheelchair or walker
- Bedside commode
- Oxygen equipment
- Other durable medical equipment related to the patient’s hospice plan of care
Not every patient needs medical equipment, and families don’t need to anticipate everything ahead of time. The hospice team can help determine what is appropriate as needs develop.
You Will Learn Who to Call When Something Changes
One of the biggest adjustments for families can be learning that hospice becomes an important first call when there is a change in the patient’s condition.
Families may naturally think of calling 911 when someone experiences increased pain, breathing changes, a fall, confusion, or another concerning symptom. Once hospice care begins, however, the hospice team should generally be contacted first for issues related to the terminal illness or plan of care.
The hospice team can help assess the situation, provide instructions, adjust medications when appropriate, or arrange additional support.
Transitions LifeCare provides hospice support 24 hours a day, seven days a week, including holidays, so families have someone to call even when concerns happen in the middle of the night or on a weekend.
The Schedule May Look Different From What You Expect
Hospice does not typically mean that a healthcare professional remains in the home around the clock. Instead, team members make scheduled visits based on the patient’s needs, with additional support available when circumstances change.
The frequency and type of visits will vary from person to person.
A patient whose symptoms are well controlled may need one schedule, while someone experiencing significant changes may require more frequent attention. The hospice team continually evaluates the care plan and adjusts support as needed.
Families should feel comfortable asking what types of visits to expect, who will be coming to the home, and whom to contact between visits.
Caregivers Will Receive Guidance, Too
Hospice care supports the family as well as the patient.
Family caregivers are often responsible for much of the day-to-day care between hospice visits, and that responsibility can feel intimidating at first. You are not expected to automatically know what to do.
The hospice team can teach caregivers about topics such as:
- Giving medications safely
- Helping reposition someone comfortably
- Recognizing changes in symptoms
- Using medical equipment
- Providing personal care
- Knowing when to call the hospice team
Ask questions whenever you have them. Something that feels small or obvious to a healthcare professional may be completely new to a family caregiver.
There May Be a Lot of Information at First
The beginning of hospice care can involve new names, phone numbers, medications, equipment, schedules, and instructions—all during an already emotional time.
You don’t have to remember everything at once.
Consider keeping important hospice information in one easy-to-find place. This might include:
- The hospice phone number
- A current medication list
- Instructions from the care team
- Names of hospice team members
- Questions you want to ask at the next visit
- Important medical or healthcare documents
If you’re unsure about something that was previously explained, ask again. The hospice team understands that families are processing a great deal of information at an emotionally difficult time.
It’s Normal for the First Week to Feel Emotional
Beginning hospice care is more than a change in healthcare services. It can represent an emotional transition for patients and the people who love them.
Some people experience sadness or fear. Others feel relief because symptoms are finally being addressed or because they no longer feel alone in managing care. Family members may experience several of these emotions at the same time.
There is no single “right” way to feel about beginning hospice.
Hospice team members, including social workers and spiritual care counselors, can provide space for patients and families to talk about concerns, fears, relationships, practical decisions, or whatever feels most important.
Your Care Plan Will Continue to Change
The plan created during the first few days isn’t permanent. Hospice care changes with the patient.
If symptoms increase, mobility changes, medications are no longer working as well, caregivers need additional help, or another concern develops, the care team can reassess the situation and adjust the plan.
That’s why communication with the hospice team is so important. Families don’t need to wait for the next scheduled visit if something changes or they have a concern.
You Don’t Have to Navigate Hospice Alone
The first week of hospice is a time of adjustment, but families don’t have to figure everything out on their own. Hospice brings together medical care, practical assistance, emotional support, and guidance with one goal in mind: helping patients live as comfortably and meaningfully as possible while supporting the people who care for them.
Transitions LifeCare has provided compassionate hospice care to patients and families in North Carolina for more than 45 years. Our interdisciplinary hospice team provides care wherever patients call home, with support available 24 hours a day, seven days a week.
If you’re considering hospice for yourself or someone you love, you don’t need to have everything figured out before calling.
Learn more about hospice care at Transitions LifeCare, make a referral, or call 919-828-0890 to talk with our team.
