Palliative Care

Care for Adults With a Serious Illness

Resources Quality Statements Working Group About

4

Goals of Care Discussions and Consent

People with identified palliative care needs or their substitute decision-makers have discussions with their interdisciplinary health care team about their goals of care to help inform their health care decisions. These values-based discussions focus on ensuring an accurate understanding of both the illness and treatment options so the person or their substitute decision-maker has the information they need to give or refuse consent to treatment.

Background

People with a progressive, life-limiting illness (and/or their substitute decision-maker) should have discussions with their interdisciplinary health care team to address the person’s goals of care, obtain health care consent, and inform decision-making when illness is advanced. The purposes of discussions about goals of care are to ensure that the person (or their substitute decision-maker, if the person is incapable) understands the serious nature of their illness, and to help the health care team understand the person’s values and goals for their care. These discussions are intended to elicit what the patient wants to achieve as a result of treatment or care that may be provided to them, and to help to prepare the patient and the provider to engage in subsequent decision-making and the consent process. Goals of care discussions will often lead to the development of a plan of treatment and a care plan (see Quality Statement 5): however, they do not constitute consent to treatment.

Informed consent must be obtained from the person or substitute decision-maker for any treatment or plan of treatment. A plan of treatment is developed by one or more health care professionals. It deals with one or more health problems, provides for the administration of various treatments or courses of treatments, and may provide for the withholding and withdrawal of treatment in light of the person’s current health condition. When individuals lack the capacity to make decisions, health care professionals must work with substitute decision-makers to determine an appropriate course of action.

What This Quality Statement Means

For Patients, Families, and Caregivers

Your care team should talk with you about your illness and how it could progress. They should also talk with you about your values and goals and your treatment options. These discussions will help you understand your illness, your goals of care, and your treatment options so you can make decisions about your care and provide health care consent.

For Clinicians

Talk to your patients about their illness, prognosis, goals of care, and treatment options. Ongoing discussions are beneficial for ensuring that patients’ values, beliefs, and wishes are aligned with the care provided. Providing information to help the patient or their substitute decision-maker provide informed consent and getting informed consent before providing treatment is your legal and ethical duty.

For Health Services

Ensure that health care professionals are given adequate education and training so they feel equipped to have meaningful conversations with their patients about their illness, prognosis, goals of care, and treatment options and to fulfil their duty to obtain informed consent.

Quality Indicators

Process Indicator

Percentage of people with identified palliative care needs who have documented discussions with a health care professional about their goals of care in their medical record

Denominator: total number of people with identified palliative care needs
Numerator: number of people in the denominator who have documented discussions with a health care professional about their goals of care in their medical record
Data source: local data collection

Outcome Indicators

Percentage of people with identified palliative care needs (or their caregivers) who state that discussions with a health care professional about their goals of care helped them to make treatment decisions

Denominator: total number of people with identified palliative care needs (or their caregivers) who had discussions with a health care professional about their goals of care
Numerator: number of people in the denominator who state that those discussions helped them to make treatment decisions
Data source: local data collection

Percentage of people with identified palliative care needs (or their caregivers) who state that discussions about goals of care with a health care professional happened at the right time

Denominator: total number of people with identified palliative care needs (or their caregivers) who indicated that they had goals of care discussion
Numerator: number of people in the denominator who state that goals of care discussions happened at the right time
Data source: local data collection
Similar questions available in the CaregiverVoice Survey:
- “Who introduced the conversation about his/her values and wishes for the kind of health and personal care they would want to receive in the future?” (Response options: “Family or friend; His/her family doctor; Palliative care doctor; Nurse practitioner; Oncologist; Other doctor/specialist; Homecare nurse; Hospital nurse; Hospice nurse; Other; Don’t know; This conversation didn’t happen”)
- “Did this conversation happen:” (Response options: “Too early; Too late; At the right time; Don’t know”)

Percentage of people receiving palliative care whose informed consent (obtained directly or from the substitute decision-maker) is documented prior to the initiation of a treatment

Denominator: total number of people who receive palliative care
Numerator: number of people in the denominator whose informed consent (directly or from the substitute decision-maker) is documented prior to initiation of a treatment
Data source: local data collection

Definitions Used Within This Quality Statement

Substitute Decision-Maker

A substitute decision-maker is a person who makes care and treatment decisions on another person’s behalf if or when that person becomes mentally incapable of making decisions for themselves. The substitute decision-maker makes decisions based on their understanding of the person’s wishes, or, if these are unknown or not applicable, makes choices that are consistent with the person’s known values and beliefs and in their best interests.

Family

Family consists of those closest to a person in terms of knowledge, care, and affection, and may include biological family, family through marriage, or family of choice and friends. The person with the progressive, life-limiting illness defines their family and who will be involved in their care.

Caregiver

A caregiver is an unpaid person who provides care and support in a nonprofessional capacity, such as a family member, a friend, or anyone else identified by the person with a progressive, life-limiting illness. Other terms commonly used to describe this role include care partner, informal caregiver, family caregiver, carer, or primary caregiver.

Goals of care

A person’s goals of care are their overall priorities and health expectations for care; these are based on their personal values, wishes, beliefs, and perception of quality of life, and what they characterize as meaningful and important. Examples of goals of care could be curing the disease, prolonging life, relieving suffering, optimizing quality of life, maintaining control, achieving a good death, and getting support for family and loved ones. Goals of care are not the same as health care decisions or consents for treatments.

Interdisciplinary health care team

An interdisciplinary health care team consists of two or more people with different types of training and skills who work together to provide care based on a person’s care plan (see Quality Statement 5). The composition of the team varies depending on the services needed. The team may include various roles, as needed: physicians, nurse practitioners, registered nurses, registered practical nurses, social workers, psychologists, spiritual care providers, pharmacists, personal support workers, dietitians, and volunteers.

Consent to treatment

Consent to treatment (health care consent) refers to an informed decision involving a mentally capable person or their substitute decision-maker and a health care provider as outlined in the Ontario Health Care Consent Act. Health care providers proposing treatment must obtain informed consent from either a capable person or their substitute decision-maker if they do not have the mental capacity. This discussion must address present condition (context), available treatment options, risks, benefits, side effects, alternatives to treatment and what would happen without the proposed treatment.

Evidence to Improve Care