Topic Overview

What is hospice palliative care?

It is hard to live with an illness that cannot be cured. You may feel lonely, angry, scared, or sad. You may feel that your treatment is doing more harm than good. You may have pain or other disturbing symptoms. Hospice palliative care can help you and your loved ones cope with all of these things.

Hospice palliative care is a kind of care for people who have illnesses that do not go away and often get worse over time and for people who are in the last stages of a terminal illness, such as cancer or heart failure. It is different from care to cure your illness, called curative treatment. Hospice palliative care focuses on improving your quality of life-not just in your body, but also in your mind and spirit. Sometimes hospice palliative care is combined with curative treatment.

The kind of care you get depends on what you need. Your goals guide your care. Hospice palliative care can help reduce pain or treatment side effects. Hospice palliative care may help you and your loved ones better understand your illness, talk more openly about your feelings, or decide what treatment you want or do not want. It can also make sure your doctors, nurses, and loved ones understand your goals and are "on the same page."

Why would I choose hospice palliative care?

Once you agree to a referral to a hospice palliative care program, your treatment goals may change from treating or curing the disease to keeping you as comfortable as possible while your illness progresses. This philosophy is a shift from usual medical treatments, in which health professionals strive to cure your disease. Hospice palliative services are not intended to speed up or prolong the dying process, but focus instead on relieving pain and other symptoms. Your hospice palliative caregivers are concerned with enhancing the quality of life by keeping you as alert and comfortable as possible in a familiar environment with family and friends.

Hospice palliative care providers are interested in what is bothering you and what is important to you. They want to know how you and your loved ones are doing day-to-day. They understand that your illness affects not just you but also those you love.

Your hospice palliative care providers will ask questions about how your illness affects your emotions and spirit. Then they will try to make sure that your medical care meets your goals for your body, mind, and spirit. They will also help you make future plans around your health and medical care.

You might see a hospice palliative care provider just once or maybe more often. He or she will work with your other doctors to give you the best care possible.

Once you have been referred to a hospice palliative care program, services may be available 24 hours a day, 7 days a week in your own home or in a hospice centre, nursing home, long-term care facility, or hospital.

What kinds of services are provided?

Hospice palliative services generally include:

• Basic medical care with a focus on pain and symptom control.
• Medical supplies and equipment as needed.
• Counselling and social support to help you and your family with psychological, emotional, and spiritual issues.
• Guidance with the difficult, but normal, issues of life completion and closure.
• A break (respite care) for caregivers, family, and others who regularly care for you.
• Volunteer support such as meal preparation or errand running.
• Counselling and support for your loved ones, including after you die.

Who is involved in hospice palliative care?

A team of health professionals will be involved with your care. These teams often include doctors, nurses, and social workers. The teams may also include spiritual advisors, dietitians, occupational therapists, pharmacists, physiotherapists, respiratory therapists, psychologists, psychiatrists, music therapists, and volunteers.

Hospice palliative care also actively involves you and your loved ones. Together you will work with health care providers in your doctor's office or your home, or in a hospital, nursing home, or hospice centre. Not all hospitals have palliative care teams. But many are working to start them. Many urban areas have programs that work together to give care, services, and support everywhere in a region.

How can I get hospice palliative care services?

If you are chronically or terminally ill, your health professional may talk to you about whether you wish to be referred to a hospice palliative care program.

Hospice palliative care programs do not discriminate. Care is provided regardless of age, sex, religion, diagnosis or type of health problem, ethnic or cultural background, sexual orientation, or ability to pay.

Coverage for hospice palliative care services varies by province and territory. For this reason, it is important to research what services your provincial health plan or private insurance offers and determine exactly which services are included. Many hospice palliative care programs will research your medical coverage for you.

Frequently Asked Questions

The Growth of Hospice Palliative Care

Hospice palliative care is not a new concept. Some doctors, nurses, and other health care workers have been giving this type of care for a long time.

The number of hospice palliative care providers around the country is increasing. So is the number of programs to train health professionals in hospice palliative care. More and more health professionals are realizing that hospice palliative care is "good medicine." They think that hospice palliative care can help anyone who has an illness that gets worse over time.

Is Hospice Palliative Care For Me?

Health professionals and hospitals are using hospice palliative care more and more. They find that patients and families like this kind of care.

Anyone who has an illness that gets worse over time can benefit from hospice palliative care. You can get care to treat your illness and hospice palliative care at the same time. You do not have to choose one or the other.

Some treatments can be curative or palliative. For example, radiation is often a curative treatment for cancer. But it can also be used to help control cancer pain. When it is used to control pain and not to get rid of cancer, it is called palliative radiation.

You may want to consider a referral for hospice palliative care if:

• You have a disease or illness that is expected to shorten your life.
• Treatment that tries to cure the disease or prolong your life has become more of a burden than a benefit to you.
• You would like to spend your remaining life as comfortably as possible in a setting that you choose, such as your own home.
• You want family and friends to participate in your care.
• You want your loved one who has a terminal illness to die comfortably at home.
• You want to learn more about the options for symptom control, personal support, and available locations of care offered by the hospice palliative care program in your area.

Although the practice of hospice palliative care is growing, some people who might benefit from hospice palliative care do not receive it for a variety of reasons. Many people, including some health professionals, simply don't know much about hospice palliative care. It can be difficult for a doctor to acknowledge that a person may be approaching the final stages of an illness and to introduce the concept of hospice palliative care services. It can also be difficult for you and your family to accept that the end of life may be approaching. Some families choose to pursue aggressive medical care up to the end.

The time may come when you decide to stop trying to cure your illness and to focus instead on comfort and quality of life. If you are at home, your hospice palliative care team will prepare your caregivers to cope with almost anything that could happen at home. But this does not mean that you cannot go to a hospital. If something happens that causes a caregiver to call 911, you may be treated in a hospital.

Many people who are living with a disease that has an unpredictable but still terminal course may also want and be able to receive hospice palliative care. People who have AIDS, amyotrophic lateral sclerosis (ALS), emphysema, heart failure, kidney (renal) disease, or Alzheimer's disease may benefit from referral to hospice palliative care when their disease has reached an advanced, terminal stage.

People of any age, including children, may receive hospice palliative care services. In some areas, there are special hospice palliative care programs for children who have cancer or other terminal diseases and for people who have AIDS.

Hospice palliative care programs do not discriminate. Care is provided regardless of age, sex, religion, diagnosis or type of health problem, ethnic or cultural background, sexual orientation, or ability to pay.

Many complex challenges face a dying or chronically ill person. Treating physical symptoms alone does not take care of emotional suffering or family upheaval. A recent study asked people what aspects of their end-of-life care they considered most important. Overall, the important factors included:¹

• Pain and symptom control and assurance that future pain and symptoms would be managed.
• Clear and participatory decision making.
• Preparation for death, with full knowledge of the changes that could occur.
• Completion, including spiritual peace, life review, resolving conflicts, spending time with family and friends, and saying good-bye.
• Contributing to the well-being of others.
• Affirmation of the individual as a unique and whole person.

Hospice palliative care helps you address these challenges and approach death as comfortably and with as much dignity as possible.

How Hospice Palliative Care Can Help You

Hospice palliative care can help you feel better as a whole person-in your body, mind, and spirit. It helps you focus on "the big picture" of your life. Hospice palliative care includes your family and loved ones.

Sometimes talking with someone who is not a friend or family member can help you see more clearly. This person could be a hospice palliative care provider.

It is important to talk about your goals and wishes sooner rather than later. That way, you, your loved ones, and your doctors know what you want. If you choose, you can be a part of every decision about your care.

Hospice palliative care works best with open communication. Try to focus on what you can do to improve communication with your palliative care provider. If you do not understand what is being said, ask questions until you do. You may want to write down your questions before your appointment or to bring a loved one to your appointment. Important questions to ask include:

• What is my diagnosis?
• What are my treatment options?
• What are the side effects of these treatments?
• What do you think will happen if I choose not to treat my illness?
• How long do you think I have to live?
• How soon do I need to make a decision about which treatment to use (or to not use)?
• How will my illness and care affect my loved ones?

You might talk about many things during a hospice palliative care visit, including:

Treatment. You get to decide how well your treatment is working and if you want to continue it. Maybe you really want to see your grandson graduate, so you decide to continue treatment even though it makes you feel sick. Or maybe you prefer to stop or limit treatment because you would rather focus on the quality of your life rather than the length of your life.

Emotional and social challenges. A hospice palliative care team can help you and your loved ones feel more at peace. Hospice palliative care team members may talk to you about your feelings about living with a long-term (chronic) illness. They may help your family get along better or share feelings more openly. They might even be able to help you find resources for money problems. It depends on what you need.

Pain and treatment side effects. You may think you have to live with side effects or pain. But a hospice palliative care doctor can often prescribe medicines to help with these. While all types of treatment have pros and cons, you can work with your doctor to find the right mix of medicines for you.

Spiritual concerns. It can be scary to think about living the rest of your life with a chronic illness. You may be struggling with questions such as "Did I do something to deserve this illness?" "Has my life been meaningful?" or "What is going to happen to me when I die?" Your hospice palliative care team can help you talk through these kinds of questions.

Goals and dreams. Maybe you have always wanted to go to Hawaii or write your life story, but travelling or writing is difficult because of your illness. A hospice palliative care team may be able to help make these goals and dreams come true.

Advance care planning. A hospice palliative care doctor may be able to help you find out what is required in your province or territory for completing an important legal paper called an advance directive. Advance directives tell your doctors how to care for you at the end of your life. For example, you decide if you want doctors to use machines to try to re-start your heart if it stops. The definition of a legal advance directive varies by province and territory.

You do not need to be bedridden or in a hospital to benefit from hospice palliative care. No matter what your physical condition, services focus on keeping you as comfortable, functional, and alert as possible. If needed, these services may include help with bathing, dressing, and eating as well as medication and treatment for all symptoms, including pain and anxiety.

You may find it helpful to read personal stories about how hospice palliative care has helped others.

How Hospice Palliative Care Can Help Caregivers

Many complex challenges face a chronically ill or dying person-as well as family and friends. Simply treating the ill person does not take care of the emotional suffering or upheaval that family and friends go through. Hospice palliative care also includes helping your family and friends with:

• Respite care. Your caregivers may need breaks. Trained volunteers may be available to relieve your loved ones for a few hours a week. If your caregivers need a longer break or must be away to attend a special event, some programs provide respite care for several days.
• Counselling and support services. Hospice palliative care can help you and your family and friends talk about differences or say important things that may otherwise go unsaid. It can also help them through their grief after you die. Most programs continue to provide bereavement services for family and friends, such as support groups and counselling, for at least a year after a loved one's death.

How to Arrange for Hospice Palliative Care

There are a number of steps to consider once you have decided to accept a hospice palliative care referral:

1. Prepare yourself and your family. You and your family may want to complete a number of legal documents. These documents include:
   • Substitute decision-maker or medical power of attorney. For more information, see the topic Choosing a Substitute Decision-Maker.
   • Advance care plan. For more information, see the topic Advance Care Planning.
   • Legal documents related to finances, property, and other matters.
2. Decide what kinds of hospice palliative care services you want.
   • Each hospice palliative care program has its own guidelines and admission rules, such as whether the program will provide artificial (tube or IV) nutrition and fluids. Ask about the guidelines for the programs in your area and how flexible they may be: For example, if they don't provide a particular service, will they work with another provider who does? You need to be clear about what you want before entering a hospice palliative care program. Use a checklist (What is a PDF document?) to record what is important to you in a program.
   • All hospice palliative care programs should provide written materials that describe their services, including who provides the services; who is eligible; costs and payment processes; and the program's insurance and liability information. Ask for this information, and read it carefully.
3. Identify hospice palliative care programs in your area. People and organizations that can help you find the programs in your area include:
   • Your doctor or hospital.
   • The medical social worker at your hospital or nursing home.
   • Your provincial or local agency on aging.
   • Provincial ministry of health.
   • The phone book (look in the yellow pages under "home care," "hospice," or "palliative care").
   • Your provincial hospice palliative care organization.
   • National organizations such as the Canadian Home Care Association and the Canadian Hospice Palliative Care Association, which publishes the Canadian Directory of Hospice and Palliative Care Services. For contact information, see the Other Places to Get Help section of this topic.

After you have begun the hospice palliative care program, you will want to:

• Be sure that your family knows what services you are to receive from the program and the schedule.
• Be sure that everyone in your family knows the names and phone numbers of important contact people caring for you. Post this information near your telephone.
• Ensure that your family will get the support they need. Choose one person who will be responsible for notifying family and friends about support group meetings, bereavement counselling opportunities, and other services that the hospice palliative care program may provide, including after a loved one dies.

If people in your family are going to miss work to help care for you, they may be eligible for Employment Insurance (EI) Compassionate Care Benefits. Check the Service Canada website for who is eligible and what forms need to be completed: www.servicecanada.gc.ca/eng/ei/types/compassionate_care.shtml.

Where to Go From Here

Write down any questions you have about hospice palliative care. Talk about your questions with your doctor during your next visit. If you would like more information on hospice palliative care, see the Other Places to Get Help section of this topic.