PATIENT & FAMILY HANDBOOK

A guide for every step of hospice care.

Your complete Generation Care guide to what hospice includes, how to stay safe and comfortable, what families can expect, and where to turn when questions arise.

Prefer to print or save it? A downloadable PDF version of this handbook will be available here shortly.

01

CHAPTER 01

The Lighthouse Model of Care

At Generation Care, the lighthouse is more than a symbol. It reflects how we approach hospice: a steady presence, guiding patients and families through uncertain waters with experienced clinicians who stay close to the care.

The Lighthouse Model of Care is built on a simple idea: that people facing serious illness deserve experienced clinicians who are personally involved — not an organization that simply assigns staff.

  • A steady, experienced clinical team you come to know by name
  • Care shaped around each patient’s wishes, values and priorities
  • Clear communication so families understand what is happening and what comes next
  • Support that continues for families before, during and after a loss
02

CHAPTER 02

How Generation Care Is Different

Many hospices offer similar services on paper. What makes care different is who delivers it and how present they remain in the decisions that matter.

Generation Care is clinician-led. Our medical director, nursing director and founder are experienced clinicians who help shape each patient’s care — not just oversee it from a distance.

  • Experienced clinicians involved in clinical decisions and changing needs
  • A team you come to know, available 24 hours a day, 7 days a week
  • Care that adapts as needs change, with clear guidance at every step
03

CHAPTER 03

What the Hospice Benefit Covers

The Medicare hospice benefit covers the care, medications, equipment and supplies related to the hospice diagnosis. Most patients pay little or nothing for covered services.

Covered services typically include:

  • Visits from doctors, nurses, social workers, spiritual counselors and home health aides
  • Medications related to the hospice diagnosis for symptom and pain control
  • Medical equipment and supplies such as a hospital bed, oxygen, or continence supplies
  • Short-term inpatient or continuous care when symptoms cannot be managed at home
  • Bereavement support for the family

Medications, treatments or care unrelated to the hospice diagnosis continue to be covered under regular Medicare or your insurance. Medi-Cal and many private insurers also offer hospice benefits. Our team can help verify your coverage and answer questions about costs.

04

CHAPTER 04

Care Settings & Benefit Periods

Hospice care is provided wherever the patient calls home, and is delivered in benefit periods.

Most hospice care takes place where the patient lives — a private home, assisted living residence, board and care home, or skilled nursing facility. Care is brought to that setting.

  • Routine home care — regular visits from the care team
  • Continuous (crisis) care — short-term intensive support during a difficult period
  • Inpatient care — a brief stay when symptoms cannot be managed at home
  • Respite care — short-term inpatient stays to give family caregivers a rest

Hospice is provided in benefit periods: two 90-day periods followed by 60-day periods, each certified by a doctor as medically appropriate. As long as eligibility continues, hospice care can be renewed.

05

CHAPTER 05

The Care Team & Volunteers

Hospice brings together people with different areas of expertise, working together around the same patient and family.

  • Physicians and nurse practitioners — medical direction and symptom management
  • Nurses — hands-on care, symptom monitoring and teaching
  • Social workers — emotional support, resources and planning
  • Spiritual counselors — presence and support aligned with your beliefs
  • Home health aides — help with bathing, grooming and personal care
  • Volunteers — companionship, practical help and a familiar presence

Volunteers are trained members of the hospice team who offer companionship, a listening ear, or help with small tasks. Their presence is one of the gifts of hospice care.

06

CHAPTER 06

Patient Rights & Responsibilities

As a hospice patient, you have rights — and a role in your own care.

You have the right to:

  • Be treated with respect and dignity
  • Participate in decisions about your care
  • Receive information about your condition and care in a way you understand
  • Refuse treatments or request changes to your plan of care
  • Privacy and confidentiality of your health information
  • Receive care free from discrimination

You are asked to help by sharing your wishes, asking questions, and letting the team know when something changes or when you have concerns.

07

CHAPTER 07

Privacy & Confidentiality

Your health information is protected. Generation Care follows federal and state privacy laws, including HIPAA.

We share your health information only as needed to provide your care, coordinate with other providers, and meet legal requirements. You have the right to see your records and to ask how your information is used.

  • Information is shared with your care team to coordinate your care
  • Family members may receive information only as you allow
  • You may request a copy of our privacy practices notice at any time
08

CHAPTER 08

Medication Safety & Disposal

Safe medication use is an important part of comfort and safety at home.

To use medications safely:

  • Keep a current list of all medications, doses and schedules
  • Take only the medications prescribed for you, exactly as directed
  • Store medications out of reach of children and visitors
  • Never share prescription medications
  • Tell your nurse about any side effects or concerns

When medications are no longer needed, dispose of them safely. Do not flush medications unless instructed. Your nurse can tell you about local take-back options and safe disposal.

09

CHAPTER 09

Home Safety

A few simple changes can make the home safer and more comfortable for a person who is ill.

  • Keep walkways clear and well lit
  • Remove or secure loose rugs and electrical cords
  • Use nightlights in hallways and bathrooms
  • Keep frequently used items within easy reach
  • Ensure the bathroom is safe — grab bars, non-slip mats, a shower chair
  • Keep emergency numbers near the phone
10

CHAPTER 10

Fire, Oxygen & Emergency Preparedness

If oxygen is in use, fire safety becomes especially important.

When oxygen is in the home:

  • No smoking or open flames near oxygen — including candles and gas stoves
  • Keep oxygen at least five feet from heat sources
  • Post “No Smoking — Oxygen in Use” signs at entrances
  • Keep a working smoke detector and fire extinguisher nearby

Keep emergency numbers handy: 911 for emergencies, and our 24/7 line at (805) 496-0044 for hospice questions. Call 911 for a fire, breathing emergency, or any immediate danger.

11

CHAPTER 11

Fall Prevention

Falls are a common risk during serious illness. A few precautions help reduce them.

  • Wear non-slip footwear, even indoors
  • Use prescribed mobility aids — a walker, cane or wheelchair
  • Rise slowly to avoid dizziness
  • Ask for help when you are unsure
  • Keep pathways clear and the home well lit

If a fall occurs, do not try to move the person if they are in pain or may be injured. Call for help and notify the hospice nurse.

12

CHAPTER 12

Pain Management

Relieving pain and discomfort is a central goal of hospice care.

Your hospice team works to keep pain and symptoms under control while preserving as much alertness and quality of life as possible. This may include medications, comfort measures and adjustments based on how you respond.

  • Tell your nurse about any pain or new symptoms — do not wait
  • Take pain medications as prescribed, on a regular schedule
  • Ask questions if you have concerns about a medication

Good pain control helps a person rest, spend meaningful time with family, and feel more like themselves. You should never feel you have to “tough it out.”

13

CHAPTER 13

Signs of Decline and Comfort

As illness progresses, the body gradually slows. Understanding these changes can help families feel more prepared.

Common changes include:

  • Less interest in eating and drinking
  • More sleeping and less communication
  • Changes in breathing patterns
  • Coolness, mottling or color changes in the hands and feet
  • Restlessness or brief confusion

These changes are a natural part of the process. Your hospice nurse can explain what to expect and help keep the person comfortable. You do not have to face these moments alone.

14

CHAPTER 14

Nutrition & Hydration

A reduced appetite and less interest in food are natural as the body slows. This can be one of the hardest changes for families to accept.

Forcing food or drink is usually not helpful and can cause discomfort. Instead:

  • Offer small amounts of foods the person enjoys
  • Offer frequent sips of water or ice chips if they want them
  • Focus on comfort — moistened lips, gentle mouth care
  • Trust the body’s natural rhythm

Your nurse can help you understand these changes and what comfort looks like at this stage.

15

CHAPTER 15

What Happens When Death Occurs at Home

Knowing what to expect can make this moment less frightening.

When death occurs at home, there is no need to call 911. Call Generation Care at (805) 496-0044, any time of day or night. A nurse will come to support you and help with what comes next.

  • There is no rush — take the time you need
  • A nurse will confirm what has happened and help with next steps
  • The team can help you contact the funeral home and complete any needed paperwork

You are not alone in this. Our team is available 24 hours a day to guide and support you.

16

CHAPTER 16

Funeral Planning & Financial Resources

Thinking ahead about funeral and financial matters can ease a difficult time for families.

Consider:

  • Discussing wishes early — burial or cremation, service preferences, any pre-paid plans
  • Choosing a funeral home and understanding costs before they are needed
  • Reviewing any life insurance, veterans benefits, or assistance programs

Our social workers can help connect you with resources and answer questions about planning. Some families may qualify for assistance with funeral costs; ask your team about options.

17

CHAPTER 17

Veteran Benefits

Veterans may be eligible for additional benefits and recognition.

If your loved one is a veteran:

  • The VA may provide a burial allowance and a headstone or marker
  • Veterans with a service-connected condition may qualify for additional support
  • Surviving spouses may be eligible for certain VA benefits
  • Veterans may receive a final honor — a flag, a certificate, or a service

Our team can help coordinate with the VA and veteran service organizations to make sure your loved one receives the recognition and benefits they have earned.

Prefer to print or save it? A downloadable PDF version of this handbook will be available here shortly.

HERE WHEN YOU NEED US

Let’s talk about what matters to you.

Whether you’re exploring care for yourself or someone you love, our team is here to listen, answer your questions and help you understand your options.

Talk With Our Team

Or call us 24/7: (805) 496-0044