What to Expect on Day One of Home Hospice Care: A Guide for Families
The decision to begin home hospice care marks a significant transition for your loved one and your entire family. While this choice often brings comfort and relief, the first day of hospice services can feel overwhelming as you navigate new relationships, information, and responsibilities. Understanding what typically happens during this initial day can help you feel more prepared and present as you begin this important journey together.
The Initial Hospice Visit
Most home hospice experiences begin with an admission visit that typically lasts between one and three hours. The hospice team will call ahead to arrange a time that works for your family, ideally when several key family members or caregivers can be present.
During this visit, the nurse team will focus on building relationship with both your loved one and your family while gathering essential information to develop a personalized care plan. They understand that this day is emotionally significant and will balance necessary tasks with sensitivity to everyone's needs.
The nurse will conduct a thorough assessment of your loved one's physical condition, current symptoms, medication regimen, and immediate comfort needs. They'll also review medical history and discuss the progression of the underlying illness to better understand what to anticipate in the coming days and weeks.
By the end of this initial visit, the team will have developed a preliminary care plan addressing your loved one's specific needs and preferences. They'll also have ordered any immediately needed medical equipment, supplies, and medications.
What to Have Ready
Preparing a few key items before the first hospice visit can help the day go more smoothly:
Medical information: Gather current medication lists, recent hospital discharge papers, advance directives, and contact information for previous healthcare providers. Having these documents readily available helps the hospice team develop an appropriate care plan quickly.
Insurance information: Have Medicare, Medicaid, and/or private insurance cards available, along with any relevant policy information. While the hospice team will handle most insurance matters, having this information ready speeds the process.
Designated contact person: Decide which family member will serve as the primary contact for the hospice team. This person should be readily available by phone and involved in daily care when possible.
Comfortable space for discussion: Arrange a quiet area where family members can speak openly with the hospice team. Some conversations may need to happen separately from your loved one to discuss sensitive aspects of care planning.
List of questions: Family members often have many questions about what to expect and how to provide care. Writing these down ahead of time ensures important concerns aren't forgotten during the initial visit.
Medications and Equipment
One of the most immediate changes you'll notice on the first day involves medications and equipment. They'll organize these medications and help create a schedule that makes them manageable for family caregivers to administer.
Essential medications for symptom management will be delivered to your home, typically within hours of the initial assessment. These often include comfort medications for pain, breathlessness, anxiety, or other symptoms common to your loved one's condition. The nurse will provide clear instructions on when and how to use these medications, including any "as needed" options for breakthrough symptoms.
Basic medical equipment will also be arranged promptly. A hospital bed, bedside commode, wheelchair, or oxygen equipment might be delivered on the first day or shortly thereafter, depending on immediate needs. The delivery personnel will set up this equipment and provide basic operating instructions, with the hospice team following up to ensure everything functions properly.
Communication Systems and Emergency Protocols
A critical component of the first day involves establishing clear communication systems between your family and the hospice team. The nurse will provide contact numbers for routine questions, urgent concerns, and after-hours emergencies. Many hospice organizations use a tiered response system with different numbers depending on the urgency of the situation.
The team will explain what constitutes a hospice emergency versus a 911 emergency. This distinction is important, as calling 911 may lead to unwanted hospitalizations or interventions inconsistent with hospice goals of care. They'll provide specific guidance on who to call in various scenarios and what to expect when you reach out for help.
You'll also receive information about the frequency of scheduled visits from different team members. While this schedule will be tailored to your loved one's specific needs, most hospice patients receive several visits weekly from nurses and home health aides, with less frequent scheduled visits from social workers, chaplains, and volunteers.
Emotional Responses and Self-Care
The first day of hospice often brings a complex mix of emotions for both the person receiving care and family members. You might experience relief that professional support is now available, anxiety about new responsibilities, sadness at this confirmation of your loved one's prognosis, or uncertainty about what lies ahead. All of these responses are completely normal.
The hospice team understands these emotional dynamics and provides space for family members to express their feelings and concerns. They recognize that each person processes this transition differently and will offer support without judgment.
From this very first day, the hospice team will emphasize the importance of self-care for family caregivers. They know that sustainable care for your loved one depends on maintaining your own physical and emotional wellbeing. The social worker may discuss respite options, community resources, or support groups that can help you navigate the caregiving journey.
What to Watch For
As you move through the first day, be attentive to these important considerations:
Symptom changes: Monitor your loved one closely for any new or worsening symptoms. The transition itself—whether from hospital to home or from curative care to hospice—can sometimes temporarily increase fatigue, pain, or anxiety. The hospice team expects this and can respond with appropriate interventions.
Medication effects: As medication regimens often change with hospice admission, watch for both positive effects and potential side effects of new medications. The hospice nurse will guide you on what to expect and when to report concerns.
Your own reactions: Pay attention to your own emotional and physical responses. Many family caregivers report feeling overwhelmed, anxious, or exhausted on this first day. Acknowledge these feelings and use the support resources the hospice team provides.
Understanding of information: The first visit includes substantial information about hospice services, care plans, and emergency protocols. If anything remains unclear, don't hesitate to ask for clarification or repetition. The hospice team expects questions and wants to ensure you feel confident in your understanding.
Looking Beyond Day One
As the first day draws to a close, remember that the hospice journey unfolds gradually. What feels new and overwhelming today will soon become more familiar. The relationships with the hospice team will develop, your confidence in providing care will grow, and new rhythms will emerge.
The care plan created on this first day is just a starting point. It will be regularly reviewed and adjusted as your loved one's needs change and as you and other caregivers become more experienced in providing support. The hospice team will guide these transitions, always working in partnership with your family.
Many families find that after the initial adjustment period, hospice care brings unexpected gifts—meaningful conversations, moments of profound connection, and the peace that comes from knowing your loved one is receiving appropriate care aligned with their wishes. Even amidst the challenges, these experiences become treasured memories.
A Final Thought
The first day of hospice marks not just the beginning of a new care approach but also a commitment to making the most of the time that remains. While much of this day focuses on practical matters, remember that the ultimate purpose of hospice is supporting quality of life and meaningful connection.
Amid the assessments, equipment deliveries, and information sharing, take moments to simply be present with your loved one. Hold a hand, share a memory, or sit quietly together. These simple acts of presence remain the most important gift you can offer, on this first day and throughout the hospice journey.
The hospice team becomes your partners in this sacred time, bringing expertise, compassion, and support to both your loved one and your family. As you close this first day, know that you are not alone—the help you need is just a phone call away, day or night, as you walk this path together.