Top 30 FAQs About Hospice: Everything You Need to Know

Published on November 24, 2023

Updated on February 18, 2024

Table of Contents

This article is a comprehensive guide to hospice care and answers the top thirty frequently asked questions about hospice care. It covers topics such as what hospice care is, who is eligible for hospice care, how to choose a hospice provider, what services hospice care provides, and much more. This article is a great resource for anyone who wants to learn more about hospice care and how it can help patients and their families during a grim time.

What is Hospice and How Does It Work?

Hospice is a special kind of care that helps people who are extremely sick and may not live much longer. Hospice is not a place, but a way of caring for people wherever they are. Hospice helps people feel better and enjoy their life as much as possible. Hospice also helps their families and friends cope with the situation.

What is hospice care and who is eligible for it?

Hospice care is for people who have a serious illness that cannot be cured or controlled by regular treatments. Hospice care is only for people who are expected to live six months or less, according to their doctor. Hospice care is not for people who want to keep trying to cure their illness or get more treatments. Hospice care is a choice that people can make when they want to focus on comfort and quality of life, rather than quantity of life.

What are the benefits of hospice care for patients and families?

Hospice care has many benefits for patients and families. Some of them are:

  • Hospice care helps patients feel relief from pain, nausea, , and other symptoms that make them uncomfortable.
  • Hospice care helps patients feel more peaceful and less anxious or depressed about their illness and death.
  • Hospice care helps patients stay at home or in a familiar place, surrounded by their loved ones and things that matter to them.
  • Hospice care helps families and friends understand what is happening and what to expect and provides emotional and spiritual support.
  • Hospice care helps families and friends cope with their grief and loss and offers counseling and resources after the patient dies.

How do I find and choose a hospice provider?

There are many hospice providers in different areas, and they may have different services and policies. You can find a hospice provider by asking your doctor, nurse, , or other health care professional for a referral. You can also search online or call your local hospice organization for a list of hospice providers near you. You can choose a hospice provider that meets your needs and preferences, such as:

  • The location and availability of the hospice staff and volunteers
  • The types and frequency of the hospice services and visits
  • The cost and coverage of the hospice care and equipment
  • The reputation and accreditation of the hospice provider
  • The philosophy and values of the hospice provider

You can ask questions and compare different hospice providers before you decide which one to use. You can also change your hospice provider if you are not satisfied with the care you receive.

How is hospice care paid for and what are the costs involved?

Hospice care is usually paid for by Medicare, Medicaid, or private insurance if you have them. Most hospice providers accept these forms of payment and do not charge you anything extra. However, some hospice providers may charge you a co-payment or a fee for some services or equipment that are not covered by your insurance. You should ask your hospice provider about the costs and coverage of the hospice care before you start it. You should also check with your insurance company about the benefits and limitations of your plan.

What services are included in hospice care and who provides them?

Hospice care includes many services that are tailored to your needs and wishes. Some of the services are:

  • Medical care to manage your pain and symptoms, such as medications, injections, oxygen, or IV fluids
  • Nursing care to monitor your condition and provide treatments, such as dressing changes, catheter care, or wound care
  • Personal care to help you with your daily activities, such as bathing, dressing, eating, or toileting
  • Social work and counseling to help you and your family cope with your illness and death, such as providing information, referrals, emotional support, or spiritual guidance
  • Volunteer services to help you and your family with practical tasks, such as running errands, doing chores, or providing companionship
  • Bereavement services to help your family and friends deal with their grief and loss, such as offering counseling, support groups, or memorial services

Hospice care is provided by a team of professionals who work together to meet your needs and goals. The hospice team may include:

  • A hospice doctor who oversees your medical care and works with your regular doctor
  • A who coordinates your care and visits you regularly
  • A hospice aide who helps you with your personal care and comfort
  • A hospice who helps you and your family with your emotional and practical needs
  • A hospice chaplain who helps you and your family with your spiritual needs
  • A who helps you and your family with your non-medical needs
  • A hospice counselor who helps you and your family with your grief and bereavement

Where can hospice care be delivered and what are the options available?

Hospice care can be delivered wherever you live, such as:

  • Your home or the home of a family member or friend
  • A nursing home or an assisted living facility
  • A hospice house or a hospice unit in a hospital

You can choose the place where you want to receive hospice care, as long as it is safe and comfortable for you and your caregivers. You can also change the place of your hospice care if your needs or preferences change. For example, you may start hospice care at home, but move to a hospice house if your symptoms get worse or your caregivers need a break.

How long can a patient receive hospice care and what happens if they live longer than expected?

Hospice care is for patients who are expected to live six months or less, according to their doctor. However, this is not a strict limit, and some patients may live longer or shorter than expected. If you live longer than six months, you can still receive hospice care, as long as your doctor certifies that you are still eligible for it. If your condition improves or stabilizes, you may no longer be eligible for hospice care, and you may choose to stop it or resume your regular treatments. You can also re-enter hospice care later if your condition worsens again.

What are the admission criteria and the referral process for hospice care?

To be admitted to hospice care, you need to meet two criteria:

  • You have a serious illness that cannot be cured or controlled by regular treatments
  • You have a life expectancy of six months or less, according to your doctor

To start hospice care, you need to get a referral from your doctor, who will write an order for hospice care and send it to the hospice provider of your choice. You also need to sign a consent form that states that you understand and agree to the hospice care plan and that you give up your regular treatments that are meant to cure your illness. You can ask your doctor, nurse, social worker, or other health care professional to help you with the referral and the consent process.

How do I start hospice care and what are the steps involved?

Once you get a referral and a consent for hospice care, you can start it as soon as possible. The steps involved are:

  • The hospice provider will contact you to schedule an initial visit and an assessment of your needs and wishes
  • You will meet with the hospice team members who will introduce themselves and explain their roles and services
  • You will receive a hospice care plan that outlines your goals, preferences, and treatments
  • You will receive the hospice services and visits according to your care plan and your changing needs
  • You will be in regular contact with the hospice team who will monitor your condition and adjust your care plan as needed
  • You will be supported by the hospice team until your death and beyond

Can I change my mind or stop hospice care at any time?

Yes, you can change your mind or stop hospice care at any time, for any reason. Hospice care is a voluntary choice that you can make or revoke at any time. If you change your mind or stop hospice care, you can:

  • Resume your regular treatments that are meant to cure your illness or extend your life
  • Seek another hospice provider that suits your needs and preferences better
  • Re-enter hospice care later if you become eligible and willing again

To change your mind or stop hospice care, you need to inform your hospice provider and sign a form that states that you are discontinuing hospice care. You also need to inform your doctor and your insurance company about your decision. You should discuss the benefits and risks of changing your mind or stopping hospice care with your hospice team and your family before you make your decision.

What to Expect from Hospice Care and How to Prepare for It?

Hospice care is a different way of caring for people who are extremely sick and may not live much longer. Hospice care helps people feel better and enjoy their life as much as possible. Hospice care also helps their families and friends cope with the situation. Here are some things that you can expect from hospice care and how you can prepare for it:

How will hospice care affect my quality of life and comfort level?

Hospice care will affect your quality of life and comfort level in a positive way. Hospice care will help you:

  • Feel less pain and from your illness and its symptoms
  • Feel more relaxed and peaceful about your illness and death
  • Feel more in control and involved in your care and decisions
  • Feel more supported and cared for by your hospice team and your loved ones
  • Feel more satisfied and fulfilled with your life and your legacy

To prepare for hospice care, you can:

  • Talk to your doctor, nurse, social worker, or other health care professional about hospice care and how it can help you
  • Talk to your family and friends about your wishes and preferences for hospice care and end-of-life care
  • Talk to your hospice provider about your goals, needs, and expectations for hospice care
  • Make a plan for your hospice care, such as where you want to receive it, who you want to be with you, and what you want to do or avoid

What are the goals of hospice care and how are they determined?

The goals of hospice care are to:

  • Provide comfort and relief from pain and symptoms
  • Enhance quality of life and dignity
  • Respect personal values and beliefs
  • Support emotional and spiritual well-being
  • Assist with practical and legal matters
  • Facilitate communication and decision-making
  • Promote coping and closure
  • Offer grief and bereavement support

The goals of hospice care are determined by you, your family, and your hospice team. You are the center of your hospice care, and your goals are the most important. Your family and your hospice team are there to help you achieve your goals and honor your wishes. You can set and change your goals at any time, depending on your needs and preferences.

To determine your goals for hospice care, you can:

  • Think about what matters most to you and what makes you happy
  • Think about what you want to do or accomplish before you die
  • Think about what you want to avoid or stop doing
  • Think about how you want to be remembered and what legacy you want to leave behind
  • Share your thoughts and feelings with your family and your hospice team
  • Ask questions and seek advice from your family and your hospice team
  • Write down your goals and review them regularly

How will hospice care address my physical, emotional, spiritual, and social needs?

Hospice care will address your physical, emotional, spiritual, and social needs in a holistic and comprehensive way. Hospice care will help you:

  • Manage your pain and symptoms with medications, treatments, and therapies
  • Express and cope with your emotions with counseling, support groups, and art or music therapy
  • Explore and nurture your spirituality with chaplaincy, meditation, or prayer
  • Connect and communicate with your family and friends with visits, phone calls, or letters
  • Enjoy and celebrate your life with activities, hobbies, or special events

To address your physical, emotional, spiritual, and social needs, you can:

  • Tell your hospice team about your needs and how they can help you
  • Ask your hospice team for any services or resources that you need or want
  • Accept and use the services and resources that your hospice team offers you
  • Participate and cooperate with your hospice team and follow their recommendations
  • Be open and honest with your hospice team and your family and friends

How will hospice care manage my pain and other symptoms?

Hospice care will manage your pain and other symptoms with a combination of medications, treatments, and therapies. Hospice care will help you:

  • Reduce or eliminate your pain and
  • Control or prevent your nausea, vomiting, constipation, or diarrhea
  • Ease or stop your , coughing, or wheezing
  • Relieve or avoid your anxiety, agitation, or confusion
  • Prevent or treat your infections, wounds, or bedsores

To manage your pain and other symptoms, you can:

  • Tell your hospice team about your pain and other symptoms and how they affect you
  • Tell your hospice team about any medications, treatments, or therapies that you are taking or using
  • Tell your hospice team about any allergies, side effects, or problems that you have with your medications, treatments, or therapies
  • Take or use your medications, treatments, or therapies as prescribed by your hospice team
  • Report any changes or concerns to your hospice team as soon as possible

What are the common medications and equipment used in hospice care and how are they supplied?

The common medications and equipment used in hospice care are:

  • Painkillers, such as morphine, oxycodone, or fentanyl
  • Anti-nausea drugs, such as ondansetron, metoclopramide, or prochlorperazine
  • Laxatives, such as senna, bisacodyl, or polyethylene glycol
  • Anti-anxiety drugs, such as lorazepam, diazepam, or alprazolam
  • Oxygen, such as tanks, concentrators, or cannulas
  • Nebulizers, such as machines, masks, or mouthpieces
  • Wound care supplies, such as dressings, gauze, or tape
  • Incontinence supplies, such as diapers, pads, or wipes
  • Bedside supplies, such as bedpans, urinals, or gloves

The medications and equipment used in hospice care are supplied by your hospice provider. Your hospice provider will:

  • Order and deliver the medications and equipment that you need or want
  • Teach you and your caregivers how to use the medications and equipment safely and effectively
  • Monitor and adjust the medications and equipment according to your needs and preferences
  • Replace and dispose of the medications and equipment as needed

How will hospice care support my family and caregivers?

Hospice care will support your family and caregivers in many ways. Hospice care will help them:

  • Understand and accept your illness and death
  • Care for you and themselves physically, emotionally, spiritually, and socially
  • Deal with their stress, guilt, anger, sadness, or fear
  • Make decisions and plans for your care and end-of-life care
  • Access and use the services and resources that they need or want
  • Grieve and heal after your death

To support your family and caregivers, you can:

  • Tell them that you love them and appreciate them
  • Tell them what you need and want from them and what they can do for you
  • Tell them what you don't need and want from them and what they don't have to do for you
  • Listen to them and respect their feelings and opinions
  • Encourage them to take care of themselves and seek help if they need it

What are the roles and responsibilities of the hospice team and the primary caregiver?

The roles and responsibilities of the hospice team and the primary caregiver are:

  • The hospice team is a group of professionals who provide hospice care to you and your family. The hospice team is responsible for:
    • Assessing and managing your pain and symptoms
    • Coordinating and delivering your care and services
    • Educating and counseling you and your family
    • Supporting and comforting you and your family
    • Communicating and collaborating with you, your family, and your regular doctor
  • The primary caregiver is a person who takes care of you at home or in another place. The primary caregiver is usually a family member or a friend, but it can also be a hired helper or a volunteer. The primary caregiver is responsible for:
    • Helping you with your daily activities, such as bathing, dressing, eating, or toileting
    • Giving you your medications, treatments, or therapies as instructed by the hospice team
    • Watching for any changes or problems in your condition and reporting them to the hospice team
    • Providing you with comfort, companionship, and love
    • Working with the hospice team and following their guidance

How often will I see the hospice team and how can I contact them?

You will see the hospice team as often as you need or want. The frequency and duration of the hospice visits will depend on your needs and preferences and may change over time. The hospice team will:

  • Visit you regularly, usually once or twice a week, or more if needed
  • Call you periodically, usually once or twice a day, or more if needed
  • Be available 24 hours a day, 7 days a week, for any emergencies or questions

You can contact the hospice team anytime you need or want. You can:

  • Call the hospice office or the 's cell phone number
  • Leave a message or a voicemail if no one answers
  • Expect a call back within a few minutes or hours, depending on the urgency
  • Ask for a visit or a consultation if you need it

What are the signs and symptoms of and how will hospice care help me cope with them?

The signs and symptoms of are different for each person, but some of the common ones are:

  • Losing interest or appetite for food and drinks
  • Sleeping more or becoming less responsive
  • Breathing more slowly or irregularly
  • Having cold or mottled skin, especially on the hands and feet
  • Having changes in blood pressure, pulse, or temperature
  • Having confusion, , or visions of people or places
  • Saying goodbye or expressing final wishes

These signs and symptoms do not mean that you are dying right away, but they indicate that your body is shutting down and preparing for death. They are normal and natural, and they do not cause you pain or suffering. Hospice care will help you cope with them by:

  • Providing you with comfort and relief from any discomfort or distress
  • Respecting your wishes and preferences for your care and end-of-life care
  • Explaining what is happening and what to expect to you and your family
  • Supporting you and your family emotionally and spiritually
  • Being with you and your family until your death and beyond

What are the bereavement services and resources offered by hospice care?

Bereavement services and resources are the help and support that hospice care offers to your family and friends after your death. Bereavement services and resources may include:

  • Sending condolence cards and letters to your family and friends
  • Making follow-up phone calls or visits to your family and friends
  • Offering individual or group counseling or therapy to your family and friends
  • Inviting your family and friends to join support groups or workshops
  • Organizing memorial services or events to honor your life and memory
  • Providing information and referrals to other community resources or agencies

Bereavement services and resources are available to your family and friends for up to a year after your death, or longer if needed. Bereavement services and resources are free and voluntary, and your family and friends can choose to use them or not. Bereavement services and resources are meant to help your family and friends cope with their grief and loss, and to heal and move on with their lives.

What are the Common Myths and Misconceptions about Hospice Care?

Hospice care is a special kind of care that helps people who are extremely sick and may not live much longer. Hospice care is not a place, but a way of caring for people wherever they are. Hospice care helps people feel better and enjoy their life as much as possible. Hospice care also helps their families and friends cope with the situation. However, there are many myths and misconceptions about hospice care that may prevent people from choosing it or benefiting from it. Here are some of the common myths and misconceptions about hospice care and the truth behind them:

Is hospice care only for cancer patients or people who are dying soon?

No, hospice care is not only for cancer patients or people who are dying soon. Hospice care is for anyone who has a serious illness that cannot be cured or controlled by regular treatments. Hospice care is for people who have a life expectancy of six months or less, according to their doctor. Hospice care is for people who have any kind of illness, such as heart disease, lung disease, kidney disease, liver disease, stroke, dementia, AIDS, or ALS. Hospice care is for people who are at any stage of their illness, from early to advanced. Hospice care is for people who want to focus on comfort and quality of life, rather than quantity of life.

Does hospice care mean giving up hope or hastening death?

No, hospice care does not mean giving up hope or hastening death. Hospice care means changing the hope from curing the illness to living the best life possible. Hospice care means hoping for peace, comfort, dignity, and joy. Hospice care means hoping for meaningful relationships, personal growth, and spiritual fulfillment. Hospice care does not hasten death, but neither does it prolong life. Hospice care respects the natural process of dying and does not interfere with it. Hospice care does not use or withhold any treatments that may affect the timing of death. Hospice care allows death to occur naturally and gently.

Does hospice care interfere with my personal beliefs or values?

No, hospice care does not interfere with your personal beliefs or values. Hospice care respects and honors your beliefs and values, whatever they are. Hospice care does not impose or judge any beliefs or values but supports and accommodates them. Hospice care does not force or persuade you to do anything that goes against your beliefs or values but helps you to do what is consistent with them. Hospice care does not ignore or neglect your beliefs or values but listens and learns from them. Hospice care does not compete or conflict with your beliefs or values but complements and enhances them.

Does hospice care take away my autonomy or decision-making power?

No, hospice care does not take away your autonomy or decision-making power. Hospice care gives you more autonomy and decision-making power. Hospice care gives you the right and the responsibility to make your own choices about your care and end-of-life care. Hospice care gives you the information and the guidance to make informed and wise choices. Hospice care gives you the support and the respect to make your choices known and honored. Hospice care gives you the freedom and the opportunity to make your choices meaningful and fulfilling.

Does hospice care limit my access to other medical treatments or interventions?

No, hospice care does not limit your access to other medical treatments or interventions. Hospice care gives you access to the medical treatments or interventions that you need or want for your comfort and quality of life. Hospice care gives you access to the medications, treatments, and therapies that can manage your pain and symptoms. Hospice care gives you access to the equipment, supplies, and services that can help you with your daily activities and personal care. Hospice care gives you access to emergency care, hospital care, or respite care that can help you with any crises or complications. Hospice care does not prevent you from getting any medical treatments or interventions that you may want to try or continue, but it does not pay for them or provide them. Hospice care does not stop you from changing your mind or stopping hospice care, but it does require you to sign a consent form that states that you understand and agree to the hospice care plan and that you give up your regular treatments that are meant to cure your illness or extend your life.

Does hospice care isolate me from my family and friends?

No, hospice care does not isolate you from your family and friends. Hospice care connects you with your family and friends. Hospice care helps you to stay at home or in a familiar place, surrounded by your loved ones and things that matter to you. Hospice care helps you to communicate and share your thoughts and feelings with your family and friends. Hospice care helps you to enjoy and celebrate your life with your family and friends. Hospice care helps you to say goodbye and express your final wishes to your family and friends. Hospice care also helps your family and friends to understand and accept your illness and death, to care for you and themselves, and to cope with their grief and loss.

Does hospice care cause addiction or dependence on drugs?

No, hospice care does not cause addiction or dependence on drugs. Hospice care uses drugs to relieve your pain and symptoms, not to harm you or make you addicted or dependent. Hospice care uses drugs that are safe and effective, and that are prescribed and monitored by your hospice doctor and nurse. Hospice care uses drugs that are appropriate and necessary, and that are adjusted and tailored to your needs and preferences. Hospice care uses drugs that are beneficial and helpful, and that improve your comfort and quality of life. Hospice care does not use drugs that are dangerous or harmful, and that cause addiction or dependence. Hospice care does not use drugs that are excessive or unnecessary, and that cause side effects or problems. Hospice care does not use drugs that are detrimental or hindering, and that worsen your comfort and quality of life.

Does hospice care impose a certain religion or spirituality on me?

No, hospice care does not impose a certain religion or spirituality on you. Hospice care respects and supports your religion or spirituality, whatever it is. Hospice care does not force or persuade you to follow a certain religion or spirituality but helps you to follow your own religion or spirituality. Hospice care does not ignore or neglect your religion or spirituality but listens and learns from your religion or spirituality. Hospice care does not compete or conflict with your religion or spirituality but complements and enhances your religion or spirituality. Hospice care also offers you the services of a hospice chaplain, who can help you with your spiritual needs, such as providing prayer, meditation, or rituals, or connecting you with your faith community or leader.

Does hospice care have any negative effects on my family or caregivers?

No, hospice care does not have any negative effects on your family or caregivers. Hospice care has positive effects on your family or caregivers. Hospice care helps your family or caregivers to:

  • Learn and improve their skills and knowledge to care for you and themselves
  • Reduce and relieve their stress and burden to care for you and themselves
  • Enhance and strengthen their relationships and bonds with you and each other
  • Receive and appreciate the help and support from the hospice team and other sources
  • Heal and grow from their experience and journey with you and hospice care

Does hospice care have any hidden agendas or ulterior motives?

No, hospice care does not have any hidden agendas or ulterior motives. Hospice care has clear and honest goals and intentions. Hospice care aims to:

  • Provide comfort and relief from pain and symptoms
  • Enhance quality of life and dignity
  • Respect personal values and beliefs
  • Support emotional and spiritual well-being
  • Assist with practical and legal matters
  • Facilitate communication and decision-making
  • Promote coping and closure
  • Offer grief and bereavement support

Hospice care does not have any other goals or intentions, such as:

  • Saving or making money from your care or death
  • Controlling or manipulating your care or decisions
  • Experimenting or testing on your body or condition
  • Judging or condemning your life or choices
  • Abandoning or neglecting you or your family

Conclusion

The goals of hospice care are to provide comfort and relief from pain and symptoms, enhance quality of life and dignity, respect personal values and beliefs, support emotional and spiritual well-being, assist with practical and legal matters, facilitate communication and decision-making, promote coping, and closure, and offer grief and bereavement support. These goals are determined by the patient, their family, and the hospice team, with the patient's wishes being the most important. Hospice care addresses physical, emotional, spiritual, and social needs in a holistic and comprehensive way, helping patients manage pain and symptoms, express and cope with emotions, nurture spirituality, and connect with family and friends. The conclusion of the article should emphasize the patient's central role in determining their goals for hospice care and highlight the holistic support provided to address their physical, emotional, spiritual, and social needs. It should also encourage open communication and collaboration between the patient, their family, and the hospice team to ensure the patient's comfort and dignity throughout their end-of-life journey.

Resources

Debunking Myths About Hospice Care with Barbara Karnes RN | EOLU Podcast

A year after Jimmy Carter's entered hospice care, advocates hope his endurance drives awareness

Understanding Hospice Care: Is it Too Early to Start Hospice?

What's the process of getting your loved one on hospice service?

Picking a hospice agency to provide hospice services

Medicare — Find and compare hospice providers

The Importance of Caregiver Journaling

Reporting Changes of Condition to Hospice

What Is Hospice?

Hospice Foundation Of America – End-of-Life Support and Resources

Medicare_Hospice_Regulations-with-2021_Updates

Family Caregiver's Guide to Hospice and Palliative Care

Understanding Hospice: Getting the Answers

Eldercare Locator: a nationwide service that connects older Americans and their caregivers with trustworthy local support resources

As an Amazon Associate, I earn from qualifying purchases. The amount generated from these “qualifying purchases” helps to maintain this site.

My Aging Parent Needs Help!: 7 Step Guide to Caregiving with No Regrets, More Compassion, and Going from Overwhelmed to Organized [Includes Tips for Caregiver Burnout]

Take Back Your Life: A Caregiver's Guide to Finding Freedom in the Midst of Overwhelm

The Conscious Caregiver: A Mindful Approach to Caring for Your Loved One Without Losing Yourself

Dear Caregiver, It's Your Life Too: 71 Self-Care Tips To Manage Stress, Avoid Burnout And Find Joy Again While Caring For A Loved One

Everything Happens for a Reason: And Other Lies I've Loved

The Art of Dying

Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying

Understanding Hospice Care: Is it Too Early to Start Hospice?

What's the process of getting your loved one on hospice service?

Picking a hospice agency to provide hospice services

Medicare — Find and compare hospice providers

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