By learning more about common end of life terms and procedures, you can develop an advance care plan that truly reflects your wishes.
You may wish to include some of these terms in your advance care plan:
End-of-life care is health care provided as a person nears end of life. This type of care focuses on you living the way you choose during your last days or weeks and providing comfort measures until the time of death.
Frailty is a health state associated with getting older. As people age, they may develop a number of serious health issues – diseases and medical conditions — that increase their vulnerability. Even fairly minor health events can trigger major changes in a person’s health status. We usually associate frailty with noticeable losses in a person’s physical, mental or social functioning.
A health care professional is a person licensed, certified or registered in their province/territory to provide health care (e.g. a doctor, nurse or social worker). Health care professionals in Ontario are guided by the Health Care Consent Act, which outlines — among other things — that they must obtain informed consent or refusal of consent each and every time they propose a treatment option.
Hospice palliative care is a philosophy of care that aims to relieve suffering and improve the quality of living and dying. It strives to help individuals and families to:
- address physical, psychological, social, spiritual and practical issues, and their associated expectations, needs, hopes and fears
- prepare for and manage end-of-life choices and the dying process
- cope with loss and grief
- treat all active issues
- prevent new issues from occurring
- promote opportunities for meaningful and valuable experiences, and personal and spiritual growth.
Informed consent refers to the decisions you make about your care that allow health care professionals to conduct medical tests and/or provide treatments. Health care professionals are required to offer you — and you are entitled to receive — detailed explanations of:
- the proposed tests/treatments
- their risks, benefits and side effects
- alternatives to the proposed tests/treatments
- treat all active issues
- what would likely happen if you refuse the tests/treatments
Health care professionals must also answer any questions you have about the tests/treatments. All this information must be provided to you before you give verbal consent or sign a consent form. If you are mentally incapable of providing informed consent, the health care professional must turn to your Substitute Decision Maker(s) to obtain consent or refusal of consent. The health care professional must get an informed consent from you or your Substitute Decision Maker(s) before giving you treatment and is not allowed to take directions from a written expression of your wishes except in an emergency.
Mental capacity means that you are able to understand the information that is important when making a particular health decision and can grasp the likely results of giving or refusing consent for a test or treatment..
Organ Donation is the process of surgically removing an organ or tissue from one person (the organ donor) and placing it into another person (the recipient). Transplantation is necessary because the recipient’s organ has failed or has been damaged by disease or injury. Make sure your family knows if you wish to be an organ and/or tissue donor. Even if you have registered as a donor, health professionals still need to ask your family for consent before recovering organs or tissue. Donation can take place only if your family consents at the time of death.
In Ontario, the Health Care Consent Act sets out who will automatically become your Substitute Decision Maker for health care. If you do not want that person to act as your Substitute Decision Maker(s), you can use a document called a Power of Attorney for Personal Care to choose a different Substitute Decision Maker(s). This document names someone as your “attorney” to make health and other personal care decisions for you when you are not mentally capable to do so for yourself.
- In the Power of Attorney for Personal Care, the word “attorney” does not mean a lawyer; it is anyone you name as your Substitute Decision Maker.
- The Power of Attorney for Personal Care is NOT the same as the Power of Attorney for Property. The Power of Attorney for Property is the document where you name a person(s) to make decisions about your money and property. The attorney for property cannot make decisions for you about your health and personal care.
Psychological care refers to the emotional, intellectual, spiritual, interpersonal and cultural aspects of care. In palliative care, psychosocial care essentially means everything except physical care. It includes providing communication and care that enhances your opportunities to direct your care, maintain relationships, and explore grief associated with the illness, the changes in your life and dying..
A residential hospice is a home-like environment where adults and children with life-threatening illnesses receive end-of-life care services. Hospice Palliative Care Ontario defines community residential hospices as: a health care facility and registered charity that provides palliative care services by an inter-professional team with palliative care expertise 24 hours a day, 7 days a week in a home-like setting for the individual and their significant others at no cost to the user.
Spirituality is the dynamic dimension of human life that relates to the way persons (individual and community) experience, express and/or seek meaning, purpose and transcendence, and the way they connect to the moment, to self, to others, to nature, to the significant and/or the sacred.
Substitute Decision Maker(s) (SDM) is a person(s) who provides or refuses consent for treatment or to withdraw treatment on behalf of another person when that person is mentally incapable of making his or her decisions about treatment. When making decisions for you, the Substitute Decision Maker(s) is required to follow any wishes you expressed about your care when you were mentally capable. If your Substitute Decision Maker(s) does not know your wishes about the treatment decision to be made, he or she is required to act in your best interests.
Your Substitute Decision Maker can be chosen in several different ways:
- By you. You can appoint someone to be your Substitute Decision Maker in a “Power of Attorney for Personal Care” (see definition above). You may appoint more than one Substitute Decision Maker.
- Automatically under Ontario’s Health Care Consent Act. If you choose not to appoint someone to be your Substitute Decision Maker, then the person who will make decisions on your behalf will be chosen based on the ranked list set out in Ontario’s Health Care Consent Act (see box).
- By the court. If you have a court-appointed guardian, then that person automatically becomes your Substitute Decision Maker.
- By the Ontario Consent and Capacity Board. If you are not mentally capable of making decisions yourself, one of your family or friends can apply to the Consent and Capacity Board to be named as your “representative”, which is a type of Substitute Decision Maker. However, if you prepared a valid Power of Attorney for Personal Care, the Consent and Capacity Board will not appoint anyone else.
- By the government. If there is no other person capable, available or willing to give or refuse consent for treatment or to withdraw treatment on your behalf, the government will appoint the Public Trustee and Guardian to be the decision-maker of last resort for you.
Symptoms are signs that you are unwell, such as pain, vomiting, loss of appetite or high fever.
A terminal illness — sometimes referred to as life-limiting or life-threatening illness — is an incurable medical condition caused by injury or disease that affect health and quality of life.