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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.

Several factors determine the best place for providing care to a person with an advanced illness. This type of decision requires a balance between patient and family needs, and the availability of resources to meet those needs.

Patient and family considerations include the following:

• patient and family preference;
• physical ability to manage aspects of care such as hygiene and movement/mobility;
• medical condition and needs such as administering medications and managing symptoms;
• economic, emotional, social, and spiritual needs.

Resources available to meet these needs vary among areas and programs, and may include the following:

• home care services;
• the healthcare team;
• technical resources for symptom management, such as pumps and injections.

When someone wants to be at home, healthcare providers ask, "Can this person manage at home?” Someone who lives alone, who is physically weak and whose burden of illness limits independence, is not safe at home. Alternatives can include a care home, a hospice, or a hospital. A person’s life expectancy often plays a role in determining the care setting.

Availability of resources is equally important in deciding where to care for someone. A person who wants to stay home needs support from family and/or friends, as well as their healthcare providers. The healthcare team won’t be in the home around the clock, so family and friends must be willing to participate in care. The healthcare team must anticipate possible symptoms so they can provide medications and other resource supports. In some parts of Canada, home care services may include providers trained in palliative care. Cooperation between the healthcare team and family or friends, can prevent possibly distressing symptoms and allow someone to die in comfort at home.

The choice of where to care for someone may come down to providing care in a setting where symptoms can be managed:

• A person may need hospital care. In some parts of Canada, there may be units intended to have patients stay in hospital for a long period. In other areas palliative care programs are community-based, and have a limited number of palliative care beds. In such programs the patient’s care is managed in the community, but they may be admitted to a designated palliative care unit within a healthcare facility, if necessary. The palliative care team there treats difficult symptoms and works to stabilize the patient. When that is achieved, the patient leaves the unit and goes back home, to a hospice, or to a care home.
  
  
• A person may die at home. Symptoms can often be managed at home. More planning is needed, but medications and other aspects of care are often the same as they are in a hospital. Some procedures can only be done in a hospital, and may require a short stay or a visit to a clinic.

One place is no better than another for receiving care. It’s usually the needs and wishes of the patient and family that determine the best place to receive care.