Setting of Care / Location

Canada has universal health care, which provides basic health care without user fees. Yet the provinces control health care, and some charge a fee to access the health system. Palliative care is a basic service in all provinces and territories, so there’s no charge for palliative care in a hospital. Provincial and territorial governments usually cover the medications in this situation.

If a person doesn’t need palliative care or acute care in a hospital or institution, then alternatives are considered. If a person’s condition is stable, then care may be better provided elsewhere such as in a hospice, care home, or the person's own home. Home care services provided by the government don’t have a fee. A care home or a hospice likely does charge a fee that usually depends on the facility or the individual's income.

If you’re concerned about the cost of care, some provinces and territories have special programs to cover all or some of the cost of medications for palliative care patients. These may apply to care at home, in a care home or in a hospice. Most of these government programs have criteria, which can be found on palliative care or provincial websites. Your health care team can tell you more about how the health care system works and specific resources in your region.

Most people worry that their final days will be filled with pain and agitation. Usually the opposite is true. In the days and hours before people die, they typically spend most of their time asleep or resting. It’s rare for pain to get worse or for distressing symptoms to appear. Most often, the various body systems just gradually and quietly shut down.

The people who are dying may worry that family members will feel lost and unable to cope. Yet, a person’s needs at the end of life are usually diminishing. Your father likely won’t eat or drink much if anything, but he won’t feel hungry or thirsty. His mouth may get dry, and you can give him some relief by wetting his mouth with a damp cloth or sponge, or with ice chips. Any pain or distress your father may feel will usually be well controlled by medications.

In your father’s final hours, his breathing will become less regular. Gradually it will slow and stop. Even without special training you will be able to recognize when the end is near, simply by the changes you observe, especially in his breathing.

You probably won’t be tempted to call 911. You’ll have spent enough time at your father’s side to recognize that what you’re seeing is a very natural progression of his illness. There may be times when it is reasonable to call emergency services. For example, something may come up suddenly that causes your father a lot of distress. You may not have the knowledge or ability to deal with his distress, and it may be that the health care team can’t respond quickly. In this case it’s appropriate to call 911 for help. Such situations aren’t common, and usually you’d try to contact your father’s health care team first.

Caring for your father at home can be a demanding experience both physically and emotionally. Your family will need to work together and help each other in order to manage. It’s also important to use the services of the health care team. They will help you with your father’s care, and they can set up home care services to give you the support you’ll need. You’ll have to be aware of your limits as caregivers, and know when to ask for help, in order to provide the best care possible for your father.

When you’re caring for someone at home you and your family need support also. This may be a very difficult time for you all, and you may need lots of answers in order to feel less worried. It’s easy to imagine that you’re the only one with such your worries, as we talk so little about death and dying in our society. Be assured though that others in your situation have very similar concerns. It’s just that people don’t always have the courage to talk about them.

Your father wants to die at home, and you want to respect his wishes. It may happen, though, that despite your best efforts, this doesn’t happen. For example, your father may have an emergency that takes him to the hospital and he doesn’t come home. If something like this happens, it’s easy to feel bad that you weren’t able to meet your dad’s wishes. Remember instead that your father was able to spend a lot of time at home, with a lot of your support.

Most palliative care programs can tell you exactly what needs to be done for expected death at home. It’s important to check with your father’s palliative care team to find out the steps you need to follow. They may advise you to make arrangements with a funeral home and the medical examiner. Often this means that your father’s physician will send a letter to the medical examiner’s office and the funeral home in advance, letting them know that a death is expected. The funeral home will be able pick up your father’s body from his home.

Having your mother’s wishes outlined on paper will help both of you. If you know more about what your mother really wants, you’ll be assured that you’re following her wishes in an emergency, rather than making decisions for her. While the name and purpose varies across the country, most areas of Canada recognize health care directives, also known as advance directives. It can be written by a patient or a lawyer, as long as it follows the procedure required in each province or territory. It’s used to guide decisions if the patient can’t communicate in any other way. The document can also name a person, called a proxy, who can make decisions on the patient’s behalf.

A directive can be general or specific. It can state that someone doesn’t want to be kept alive against his or her wishes, or it can state that someone wants all possible treatments within generally accepted medical standards. It should provide for appropriate pain control, comfort care and respect for the patient’s dignity.

For your mother, it’s important that a directive states that she wants to die at home. It’s important also that it specifies how she wants to be cared for in certain circumstances. For example, it can state whether she wants cardiopulmonary resuscitation (CPR), a ventilator for breathing, or other treatments. In preparing a directive your mother may find it useful to talk with her health care team about the benefits and risks of specific treatments. If your mother names a proxy, she must ensure that the proxy knows her values intimately and understand her wishes. The proxy may become her spokesperson, interpreter and advocate.

In most areas, a directive has no legal effect if your mother can still make her own decisions. Health care providers can’t ignore what she says in favour of written instructions. They need her consent for treatment if she’s capable of giving it. If she can’t, then health care providers are legally obliged to follow instructions in a health care directive if one exists. Therefore, it’s a good idea that key people have copies of the directive. This may include family members, health care team members, and especially the proxy who may need to act on her behalf. Some patients carry their own copy at all times and leave a copy with their lawyer.

If your mother has a stroke or heart attack, and 911 is called, things can become complicated. If your mother dies suddenly, and doesn’t want to be resuscitated, you may want to avoid calling emergency services. Paramedics generally are required to resuscitate and stabilize patients until they’re brought to a hospital. If paramedics are told about a health care directive and it addresses this scenario, then they’re legally obligated to follow it. A directive makes it more likely that your mother’s wishes will be respected.

If your mother doesn’t want to be resuscitated, it’s important to make sure everyone in the family knows this. People can panic in emergencies and it may be hard to resist calling emergency services if she dies suddenly. The impulse to call 911 may be redirected if you’ve made different emergency arrangements beforehand. This can include having a health care provider agree to visit when your mother dies, and arranging to have your mother’s physician write a letter to the medical examiner’s office. In areas where certain deaths need to be reported, the letter gives notice of the likely circumstances of a death. Then, when your mother dies you notify your mother’s physician or nurse, and call the funeral home when you’re ready. The funeral home will then pick up your mother’s body.

If your mother wants to stay at home to die, plans can help make it happen. Even with a plan in place, though, people can react unpredictably in the face of death. If there’s a directive in place it can help keep the focus on your mother’s wishes, even in an emergency.