When a loved one's health declines and cure is no longer the goal, hospice provides comfort-focused care that honors dignity and quality of life. Many families are surprised to learn that hospice can be provided in adult family homes, combining the personalized residential care of an AFH with specialized hospice services.
Understanding Hospice Care
According to the National Hospice and Palliative Care Organization, hospice is appropriate when:
- Life expectancy is six months or less if the disease runs its natural course
- The focus shifts from curative treatment to comfort
- The patient (or family for those unable to decide) chooses comfort care
What Hospice Provides
- Pain and symptom management
- Emotional and spiritual support
- Medical equipment and supplies
- Medications related to the terminal diagnosis
- Nursing visits
- Social work support
- Bereavement support for families
How Hospice Works in Adult Family Homes
The Partnership Model
Hospice works alongside the AFH care team:
- AFH continues providing daily care (bathing, feeding, supervision)
- Hospice provides specialized medical oversight and support
- Hospice nurses visit regularly and are on-call 24/7
- AFH staff communicate changes to hospice team
- Family continues involvement in care decisions
Benefits of AFH Hospice Care
- Familiar environment and caregivers
- 24-hour presence without hospital setting
- Personalized attention
- Family can visit without hospital restrictions
- Home-like setting for final days
When to Consider Hospice
Signs It May Be Time
- Frequent hospitalizations with declining recovery
- Significant unintentional weight loss
- Increasing weakness and fatigue
- Declining ability to perform daily activities
- Treatment is no longer effective or desired
Starting the Conversation
- Discuss with the primary physician
- Request a hospice evaluationâthere's no commitment required
- Involve family members in discussions
- Focus on quality of life and comfort
Paying for Hospice
Hospice is covered by:
- Medicare: Fully covers hospice services for qualifying patients
- Medicaid: Covers hospice services
- Most private insurance: Typically includes hospice benefits
Note: Hospice coverage is separate from AFH room and board. The AFH continues to be paid for daily care while hospice provides medical services.
What Families Can Expect During Hospice
The Hospice Team
A comprehensive hospice team includes:
- Hospice physician: Oversees medical care and certifies eligibility
- Registered nurse: Manages symptoms, educates family, coordinates care
- Home health aide: Assists with personal care (supplements AFH care)
- Social worker: Emotional support, resource connection, family counseling
- Chaplain: Spiritual support regardless of religious affiliation
- Volunteers: Companionship, respite for family
Typical Visit Schedule
- Nursing visits: 1-3 times weekly initially, increasing as needed
- Aide visits: As needed for personal care
- Social worker/chaplain: Based on patient and family wishes
- 24/7 nurse on-call for urgent concerns between visits
Supporting Your Loved One in Hospice
Being Present
- Visit as often as feels right for you and your loved one
- Presence matters even if they're not fully responsive
- Speak normallyâhearing often remains until the end
- Touch can provide comfort (holding hands, gentle massage)
Creating Meaningful Moments
- Play favorite music
- Read aloud from meaningful books or letters
- Share memories and stories
- Say what you need to sayâexpress love, gratitude, forgiveness
- Allow silence; you don't need to fill every moment with words
Taking Care of Yourself
According to the Hospice Foundation of America, family self-care is essential during this time:
- Accept help from others
- Rest when you can
- Take breaksâyou cannot be present 24/7
- Use hospice social worker and chaplain support
- Know that grief starts before death (anticipatory grief)
Frequently Asked Questions
Can my loved one stay in their adult family home for hospice?
Yes, most adult family homes can and do support residents receiving hospice care. The AFH continues providing daily care while hospice provides specialized medical support. Confirm with your specific home that they're willing and able to support hospice care.
Does choosing hospice mean giving up?
No. Hospice is choosing quality of life over aggressive treatment that may not help. Many people live longer and better on hospice because pain and symptoms are better managed. Hospice can be discontinued if condition improves or the patient changes their mind.
What if the AFH can't manage symptoms?
Hospice provides 24/7 nurse support for symptom crises. If symptoms can't be managed in the AFH, hospice may arrange transfer to a hospice inpatient facility temporarily. The goal is always to return to the AFH when stable.
How will I know when the end is near?
Hospice staff will educate you about signs of declining condition. Common signs include decreased eating and drinking, increased sleep, withdrawal, and changes in breathing. Hospice is available to answer questions and provide support throughout.
What support is available for family members?
Hospice includes family support: social workers for emotional support, chaplains for spiritual needs, and bereavement services continuing 13 months after death. Take advantage of these servicesâthey're included in hospice care.