Topic Overview

"When my doctor told me my cancer couldn't be cured and I probably had 6 months at best, it was hard to believe I'd run out of options. But then I started hospice palliative care, and it's helped me face my fears. And I'm making decisions about how I want to go out and what will happen afterwards. It's given me back at least a little feeling of control."—Avery, 81

"My hospice palliative care nurses have encouraged me to try to make the most of every day. I say 'I love you' a lot more, and I try to be honest about my feelings, to myself and to others. I'm so grateful for my hospice palliative care team. They are a blessing."—Barbara, 68

What is hospice palliative care?

Hospice palliative care provides medical services, emotional support, and spiritual resources 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 serious illness, such as cancer or heart failure. Hospice palliative care also helps family members manage the practical details and emotional challenges of caring for a dying loved one.

The goal is to keep you comfortable and improve your quality of life.

Hospice palliative care programs offer services in your own home or in a hospice palliative care centre. Some hospice palliative care programs also offer services in nursing homes, long-term care facilities, or hospitals.

Some people think that starting hospice palliative care is a last resort, that it means they're giving up on life. Some think that hospice palliative care means a lower level of medical care. But hospice palliative care is simply a type of care that focuses on the quality of your life instead of on continuing with treatment to prolong your life.

Why choose hospice palliative care?

During the often difficult last stages of a serious illness, many people feel that they have lost control over their lives and over what will happen to them.

Hospice palliative care can show you your options. And knowing your options gives you back some control. It allows you to make decisions about things that are important to you.

What kind of services are provided?

Hospice palliative care services usually 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 preparing meals and running errands.
• Counselling and support for your loved ones after you die.

Who is involved with hospice palliative care?

Hospice palliative care 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 palliative care centre. Not all hospitals have hospice 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.

In addition to a doctor and nurses, hospice palliative care teams usually include:

• Social workers.
• Medicine specialists.
• Spiritual advisers.
• Nursing assistants.
• Trained volunteers.

Some hospice palliative care teams also include:

Some people worry about losing touch with their regular, trusted doctor. But he or she can work with others on your team to stay involved in your care.

Considering Hospice Palliative Care

The last stages of a serious illness can be so hard. You may feel like you have lost control over your life and what will happen to you.

Hospice palliative care can help you get back some control by showing you what your options are and helping you make decisions about things that are important to you.

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.

You may want to consider 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 serious illness to die comfortably at home.

Some people who might benefit from hospice palliative care don't receive it. Many people, including some health professionals, simply don't know much about it. It can be hard for a doctor to talk to a patient about hospice palliative care, because it means talking about the end of life.

It can also be hard for you and your family to accept that the end of life is near. Some families choose to pursue aggressive medical care up to the end.

Hospice palliative care for special situations

Some people are living with a terminal illness that is not predictable. They may not necessarily die within a few months. In fact, they may live for several years. But they may still be eligible for hospice palliative care.

People who have the following illnesses may benefit from hospice palliative care when their disease has reached an advanced stage:

• Cancer
• AIDS
• ALS
• Emphysema
• Heart failure
• Kidney disease
• Alzheimer's disease

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.

How to talk to your family and medical team

If you feel that you need to ask questions and explore your options about end-of-life care, including hospice palliative care, don't wait for your doctor or loved ones to bring up the subject. Be open and direct with your loved ones and your health professionals.

Your doctor can go over hospice palliative care and other options with you. He or she can explain the pros and cons of each of them, answer questions, and advise you. Then you can think about the kinds of treatments you would or would not want in different situations. This can help you get a clear idea of your wishes.

You can make many choices about your end-of-life care ahead of time. Making plans while you are still able may ease your mind and make your final days more peaceful.

Write down any questions you have about hospice palliative care to discuss with your doctor during your next visit. Let your family and doctor know what you decide so they can help carry out your wishes.

The goals of hospice palliative care

One goal of hospice palliative care is to allow you to live out your life without further treatment for your illness, as naturally as possible. You'll get medical care to provide comfort rather than to prolong life.

For example, chemotherapy may no longer be used to cure your cancer, but it may be given to reduce pain.

People who want to live as long as possible by any medical means are not a good match for hospice palliative care.

Another goal of hospice palliative care is to give you as much control and dignity as possible during the time you have left. For example, most people in hospice palliative care can choose to die at home, surrounded by loved ones, rather than in a hospital, hooked up to one or more machines.

Other medical care is always available

It's important to understand that hospice palliative care doesn't include treatment to cure your illness. But your hospice palliative care team will prepare your caregivers to cope with almost anything that could happen at home.

And being in hospice palliative care doesn't mean that you can't go to a hospital if you need to. When a hospice palliative care program takes over your care, they will work with you to arrange for any medical care that you need. If something happens that causes a caregiver to call 9-1-1, you may be treated in a hospital and later return to hospice palliative care.

Receiving Hospice Palliative Care

When you decide to be cared for by a hospice palliative care program, it means that your treatment goals will shift from doing everything possible to cure your condition to giving you the best quality of life that is possible in the time you have left.

You don't need to be bedridden or in a hospital to benefit from hospice palliative care. No matter what your physical condition, hospice palliative care services focus on keeping you as comfortable, functional, and alert as possible.

Hospice palliative care services

Your hospice palliative care team may include medical professionals, counsellors, therapists, social workers, spiritual advisers, home health aides, and trained volunteers. Your team can:

• Help with advance care plan forms and making sure that your wishes about life support and CPR (cardiopulmonary resuscitation) are carried out.
• Answer questions about palliative treatments, which relieve pain and other symptoms.
• Help you with things like daily activities, bathing, eating, and moving around.
• Help you figure out what is important in terms of putting your legal and financial affairs in order.
• Help you and your family talk to each other and deal with difficult emotions.
• Give your caregivers a break (respite care). 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 hospice palliative care plans provide respite care for several days.

Counselling and support

Counselling and support services that hospice palliative care provides can help you to:

• Resolve differences with family and friends or say important things that may otherwise go unsaid.
• Review your life and set goals for the time you have left.
• Explore spiritual issues.

Hospice palliative care also includes helping your family and friends 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.

Arranging for Hospice Palliative Care

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

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.
• Other legal documents related to finances, property, and other matters.

Choosing a hospice palliative care program

Your doctor or a member of your health care team may refer you to a hospice palliative care program. If not, you may want to ask your doctor to do so.

People and organizations that can help you find hospice palliative care programs include:

• Your doctor or hospital.
• The medical social worker at your hospital or nursing home.
• Your provincial or local agency on aging.
• Your 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.

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 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.

Staying organized

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.
• What the schedule is.
• The names and phone numbers of important contact people at the hospice palliative care program. Post this information near your telephone.

It's also important to make sure that your family will get the support they need after you die. Choose one person to 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.

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.

Write down any questions you have about hospice palliative care. Talk about your questions with your doctor during your next visit.