Caregiver’s Guide to Hospice (2022)

Written by the Open Caregiving Team. Editorial review by Joyce O. Murphy RN, MSN.

What It Is| When To Consider | End-of-life Conversations | Find a Provider | Preparation | Grief & Bereavement

What Is Hospice

Hospice is a type of end-of-life care that focuses on improving a patient’s quality of life and preserving their dignity. Its goal is to ensure comfort rather than trying to cure a person’s illness or disease. Hospice care includes services delivered by healthcare professionals with a goal of assuring quality care and reducing pain. Hospice provides emotional support, aiding family caregivers in the last stage of their loved one’s life.

This guide explains what makes hospice care unique. It also clarifies misconceptions about hospice that can confuse a family when making important decisions about care options.

Topics Covered:

  • How does hospice work?
  • What services does hospice provide?
  • Where is hospice care provided?
  • What is the difference between palliative care and hospice care?
  • Common misunderstandings about hospice.

When to Consider Hospice

Hospice can be a very sensitive topic for a family caregiver to bring up with family members. Loved ones may not be familiar with the topic or are not ready to discuss it. As you read about hospice and the ways in which hospice benefits all who are involved, your family can decide if it’s a suitable option for your loved one’s care.

In the past, hospice was viewed as care for the very last days of life. Recently more people have seen the benefits of beginning hospice care earlier rather than later. The information in this guide helps you decide if and when hospice is the best option for your loved one.

Topics Covered:

  • Who is best suited for hospice?
  • When is the right time to start discussing hospice?
  • Can someone leave hospice care?

How to Have End-of-life Conversations

Thinking about life’s end is hard for many people. It brings up lost hopes, nagging regrets, and special people who will grieve. While it may be daunting to have a conversation and create a thoughtful plan, your loved one deserves to share their innermost thoughts, even if they do so with hesitation.

This guide provides the reasons why end-of-life conversations matter. You’ll gain insights on how to proceed, whom to include, and steps for planning your loved one’s remaining time.

Topics Covered:

  • Why are end-of-life conversations so important?
  • How do you start the end-of-life conversation with a loved one?
  • Who should be included in the hospice discussion?
  • Communication tips for discussing hospice with your family members.
  • How to discuss hospice with your physician.
  • How to make hospice decisions together.

How to Find the Best Hospice Provider Near You

Finding the right hospice provider for your loved one can be stressful for some caregivers. This is because it is such an emotional time for everyone involved. Often you will get a recommendation from a hospital social worker or physician. Although this is a good start, it is worthwhile to do your own research to learn about other available options. This includes how other caregivers and patients have rated these hospice providers. All the information you gather will help your loved one decide which hospice is the one with which they are most comfortable.

This guide walks you through the steps that ensure your loved one gets the best care in their remaining days of life.

Topics Covered:

  • Paying for hospice care.
  • How do I find the best hospice provider near me?
  • Questions to ask when choosing a hospice provider.

How to Prepare for Hospice

It is a big step for your loved one and family to decide that hospice care is the best course for your loved one. Now that your decision has been made, it’s time to prepare. This includes everything from a hospice plan and getting necessary medical equipment, to finances and family discussions. Having a checklist helps to guide your process, assuring that all needs are addressed.

This guide helps you through changes you may need to make to your home, what to expect from the hospice team, and how you can be there for your loved one.

Topics Covered:

  • Preparing your home for hospice.
  • Organizing documents and information before hospice care begins.
  • Creating a hospice plan with your loved one’s hospice team.
  • What to expect from hospice.
  • How to best care for your loved one in hospice.
  • Caring for yourself while your loved one is in hospice.

Grief Counseling and Bereavement Services

While grief is a common emotion among humans, it is important to acknowledge that every individual experiences grief differently at different times in their life.

This guide brings awareness to the different types of grief and signs that you may be grieving. It includes how to be there for others who are grieving and where to find help if your grief becomes overwhelming.

Topics Covered:

  • What is grief?
  • What are the signs that I am grieving?
  • What are the stages of grief?
  • How long does grief last?
  • Is it normal for a caregiver to grieve before their loved one passes?
  • What bereavement services does hospice offer?
  • Caring for yourself as you grieve.

Learn About Hospice for Specific Illnesses

Hospice for Dementia and Alzheimer’s

Dementia in any form causes sadness and stress for your loved one, family, and friends. It is hard to bear witness to the decline of someone who was once a central part of others’ lives. This section of hospice is devoted to the needs of your loved one who is approaching the later stages of dementia.

Hospice for Cancer

Cancer is one of those diseases that seemingly has no limits. Many families and communities are affected by cancer and need to have hospice care available if it reaches the later stages. The following content provides you with answers to the questions you have about hospice because your loved one has cancer and you want to be prepared to help them.

Hospice for Heart Disease

Heart disease is the leading cause of death in the U.S. It is that way for both men and women, and for people of all races and cultural backgrounds. Heart disease can be quite disabling and cause people to linger during their later years of living. This hospice section answers common questions and helps prepare those caring for loved one’s with end stage heart disease.

Hospice Care for Lung Disease

Chronic lung diseases, such as chronic obstructive pulmonary disease (COPD) and emphysema, progressively weaken your loved one. Physical activity slows as their lungs work harder to provide oxygen for their body. Hospice is there to provide your loved one and you with the support needed to provide comfort at the end-stage of the disease. This hospice section helps answer your questions about hospice care for lung disease.

Hospice for a Stroke Patient

People who have had a stroke can have physical, emotional, and mental changes. The types of harm a stroke causes vary by person based on where in the brain a stroke happened and the extent of damage it caused. This content provides you with information about hospice care for your loved one whose life has changed due to a stroke.

Hospice for Children

Much of the hospice care in the U.S. is provided for adults age 65 and older. More recently, there has been a growing focus in assuring that tailored hospice care is available for children who have a terminal or serious illness. Caring for your child who is very ill requires special physical and emotional care as well as planning for your whole family. This content provides you with guidance about how to approach hospice for children.