Hospice Palliative Care

Topic Overview

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.

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 improving the quality of your life when you have a serious illness.

Why choose hospice palliative care?

There are many reasons why you might choose hospice palliative care. You might choose it if treatment for your disease has become more of a burden than a benefit. Or you might choose hospice palliative care if you want to focus on comfort rather than medical treatments.

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 take care of you.
• Volunteer support. Volunteers may do things such as prepare meals or run errands.
• Counselling and support for your family and friends to help them grieve.

Who is involved with hospice palliative care?

A team will manage your care. This team usually includes a doctor, nurses, a social worker, and trained volunteers. A family member or loved one may look after you much of the time. Other professionals may help, such as a dietitian, a counsellor, a physiotherapist, or a spiritual adviser.

Can you benefit from hospice palliative care services?

Hospice palliative care is most often provided for people with a serious illness in the last months of life. But anyone who is living with a life-limiting illness can benefit from it. You don't need to be confined to a bed or in a hospital to be eligible for hospice palliative care.

It can be hard for doctors to know how long someone will live. Some people live longer than expected. If you live longer than expected, you can keep having hospice palliative care. If your illness gets better, you can stop getting hospice palliative care. You may no longer qualify for it.

Hospice palliative care is generally paid for by provincial health plans and private insurance. Care may also be available to those who can't pay.

Considering Hospice Palliative Care

Living with a serious illness can be hard. You may feel like you have lost control over your life and what will happen to you.

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.

You may want to choose hospice palliative care if:

• You have a disease or illness that is expected to shorten your life.
• Treatment for your disease has become more of a burden than a benefit.
• You want to spend the time you have left in a setting of your choice, such as your own home.
• You want to focus on comfort rather than medical treatments.
• You want family and friends to take part in your care.
• You want your loved one who has a serious illness to die comfortably at home.

Who can benefit?

Hospice palliative care is most often provided for people with a serious illness in the last months of life. But anyone who is living with a life-limiting illness can benefit from it. You don't need to be confined to a bed or in a hospital to be eligible for hospice palliative care.

It can be hard for doctors to know how long a person will live. If you live longer than expected, you can keep having hospice palliative care. If your illness gets better, you can stop getting hospice palliative care. You may no longer qualify for it.

Hospice palliative care is generally paid for by provincial health plans and private insurance. Care may also be available to those who can't pay.

Hospice palliative care for long-term illness

Some people are living with an illness that isn't predictable. In some cases, 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 is unpredictable but still life-limiting may also want and be able to get hospice palliative care. In some of these cases, your provincial health plan or private health insurance might not cover hospice palliative care costs.

The goals of hospice palliative care

The goal of hospice palliative care is to improve the quality of your life when you have a serious illness. Depending on your illness, you may either get medical care to provide comfort or to prolong life. If you are near the end of your life, hospice palliative care workers will keep you as alert and pain-free as they can.

For example, chemotherapy may no longer be used to cure your cancer. But you might get it to reduce pain.

Another goal of hospice palliative care is to give you as much control and dignity as possible during the time you have left.

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Receiving Hospice Palliative Care

Hospice palliative care care often includes:

• Basic medical care with a focus on pain and symptom control.
• Access to a member of your hospice palliative care team 24 hours a day, 7 days a week.
• Medical supplies and equipment as needed.
• Counselling, social, and grief support for you and your family.
• Guidance with the difficult, but normal, issues of end-of-life and closure.
• A break (respite care) for caregivers, family, and others who take care of you.
• Volunteer support.

Your hospice palliative care 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 able to relieve your caregivers for a few hours a week. If your caregivers need a longer break or must be away to attend a special event, some hospices provide respite care for several days.

Hospice palliative care also provides counselling and support services. They can help you to:

• Resolve differences with family and friends. Or they can help you to 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 members grieve after you die. Most programs will provide bereavement services for those close to you for at least a year after your death. Services include things like support groups and counselling,

Arranging for Hospice Palliative Care

You will need to fill out some forms for hospice palliative care. These include:

• An advance care plan. This usually includes:
  • A proxy directive.
  • A personal directive.
  These forms may be called something else in your province.
• Provincial health plan or private insurance forms. Hospice palliative care services are usually covered by provincial health plans in most cases. They are also covered by many private insurance plans. Check with your provincial health authority or your private health insurance plan about the services your plan covers.
• Other legal documents related to finances, property, and other matters.

After you start the hospice palliative care program, you will want to get all billing arrangements in writing. This includes costs not covered by your health plan and payment arrangements you may be responsible for. Be sure to keep a copy.

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 centre.

Choosing a hospice palliative care program

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

Or you may choose a hospice palliative care program yourself. To start, call some of the programs in your area. People and organizations that can help you find hospice programs include:

• Your doctor or hospital.
• The medical social worker at your hospital or nursing home.
• Your local or provincial agency on aging.
• Your local health unit.
• Your private health insurance provider.
• Your provincial hospice palliative care organization.
• The Canadian Hospice Palliative Care Association.

All hospice palliative care programs should provide materials that describe their services. This includes who provides the services, who is eligible, how much it costs, and how to pay. And they should describe the program's insurance and liability information. Ask for this information. Read it carefully.

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