End of Life Care

On palliative and end-of-life care, please visit here and thecarenet.ca.

The doctors will do their best to determine the diagnosis and prognosis, or outlook, for your loved one, and discuss the potential treatment options. However, in order to select the best treatment option, the team needs to know a bit about your loved one’s values. Here is why it’s important to know the patient’s values:

• Sometimes, medical treatments may be able to prolong life, but not be able to restore your loved one to his or her previous state of health;
• In other situations, medical treatments may have only a very small chance of success, and may cause discomfort or other forms of suffering;
• Many people may not want to receive these types of medical treatments. So the team will ask whether your loved one would prefer to receive something less invasive, and aimed toward comfort;
• This is a personal decision, and if your loved one cannot speak and make a decision, the team will need you to decide on his or her behalf.

Sometimes patients are too sick to recover, or they will only recover to a very poor state of health. If members of the team feel that your loved one may be too sick to recover, they will talk to you about potential options. The goal is to keep patients as comfortable as possible, while still allowing the team to monitor them and provide the care they require.

You may not agree with the options recommended by the healthcare team. If so, it may be helpful to ask questions to better understand why the team is making a particular recommendation and explain why you disagree. If after clarification, you still do not agree with the healthcare team, there is a series of steps that you can follow:

• First, you may ask for a second opinion about the options;
• Second, you can ask the Office of the Patient Experience to become involved. This is a service provided by each hospital that can help mediate during discussions with the healthcare team;
• Third, you can ask the team to try to arrange a transfer to another healthcare facility or physician who might be willing to provide the treatment that you are requesting.

The Consent and Capacity Board (CCB) consists of a panel of experts that become involved when there are disagreements about the care of patients who are not able to express their preferences. The expert panel gets involved only when a patient is not able to make decisions and has not left clear instructions about what care the individual would want in the circumstances. In the case of the ICU, the Consent and Capacity Board is typically involved in answering one of two questions:

• What treatment or option the patient would have wanted?
• Who the substitute decision-maker should be when there is disagreement among potential decision-makers?

What is palliative care in the ICU?

Palliative care is a specialty of medicine that helps with symptom management, decision-making and support for families and patients with serious and incurable illnesses.

Palliative Care specialist: An individual involved in the care of a palliative patient. A palliative care specialist may be helpful in the following circumstances:

• A patient has severe pain or other complex symptoms;
• If there is a plan to transfer a patient to the ward or a palliative care unit directly from the ICU, the palliative specialist provides continuity of care.

What will happen if we decide to withdraw life support?

It can be very difficult to make the decision to withdraw life support, but the team will continue to care for your loved one in order to lessen pain and discomfort.

• Before withdrawing life support, members of the care team will explain what they are doing;
• They may remove life support slowly or quickly, but as they remove life support they will give medications to make s ure that your loved one does not suffer;
• You may notice that your loved one starts to breathe more quickly, or you may hear noises when they breathe;
• If your loved one appears to be feeling any pain or suffering, the team will give medication to provide relief;
• You can be present at the bedside throughout the process, or you can choose to stay outside of the room. Either option is okay.

Dying at Home

The ability to go home varies from patient to patient. It depends upon the individual’s medical condition and whether the appropriate support can be provided at home. The doctor responsible for the patient’s hospital care should be able to tell you if going home is a possibility.

The doctor will inform other members of the team about your wishes and start the paperwork requesting home care.

• The patient will be examined by members of the healthcare team to determine what additional supports, or specialized equipment, will be needed at home;
• A social worker will meet with your family to explain what to expect once the patient arrives home.

Help from nursing staff, personal support workers, and certain equipment and medical supplies are provided through your local Community Care Access Centre (CCAC).

• The medical team at the hospital will file a home-care application with CCAC on behalf of the patient;
• Each CCAC in the province has its own policies and criteria for providing home care. This means the level of services available varies across Toronto and the province.

Although you can count on some outside support from healthcare and personal support providers, family members will have the primary responsibility for looking after the day-to-day needs of the patient.