Regulation Matters 2018 - Issue 1

Managing the Right to Refuse Treatment in the Workplace


Patrick is a 75-year-old resident with dementia and dysphagia in a long-term care (LTC) home. His daughter, Ellen, is his substitute decision-maker. The dietitian, in consultation with the speech-language pathologist and physician, recommended a minced, thickened fluid diet as the safest nutrition care plan.

The dietitian sought informed consent from Ellen for the proposed diet but Ellen refused. She requested that her father be on a regular diet as she felt that this would improve his quality of life. The dietitian discussed with Ellen the risks of Patrick consuming a regular diet but she was still firm on her request. The dietitian documented the discussion, then ordered a regular diet for Patrick.

The Administrator of the LTC home heard about this situation and informed the dietitian that the home cannot provide a regular diet to Patrick due to his risk of aspiration. The dietitian was left uncertain on how to proceed.

Professional Obligations

The dilemma in this scenario is that the dietitian is caught between the wishes of the substitute decision-maker who is requesting a regular diet, and the conflicting direction by her employer.  

The dietitian has a legal and professional responsibility to obtain informed consent or refusal for treatment under the Health Care Consent Act, 1996 (HCCA). This professional obligation is also articulated in the College’s Professional Misconduct Regulation and the Standards of Consent.

The fundamental principles and laws about consent are based on the respect for a client's right to make informed decisions about their health care. True informed consent is at the heart of client-centred care. When a client doesn’t have the capacity to make their own health care treatment decisions, the right to consent or refuse treatment is exercised by a substitute decision-maker (SDM).

Note that the College does not give legal advice and members are advised to seek their own legal counsel as necessary.

Does the Daughter Understand her Responsibilities as an SDM?

A first step that the dietitian can take is to establish whether Patrick’s daughter, Ellen, fully understands her responsibilities to act as her father’s SDM. If unsure, the dietitian can review Patrick’s health care record to determine whether someone else within the care team has had this discussion with Ellen before. If not, the dietitian and the care team can determine the most appropriate provider to engage in such a conversation with her.

Ellen must make health care treatment decisions on behalf of her father based on the following principles that are outlined within the HCCA:

“1. If the person knows of a wish applicable to the circumstances that the incapable person expressed while capable and after attaining 16 years of age, the person shall give or refuse consent in accordance with the wish.

2. If the person does not know of a wish applicable to the circumstances that the incapable person expressed while capable and after attaining 16 years of age, or if it is impossible to comply with the wish, the person shall act in the incapable person’s best interests.”
Under the HCCA, when deciding what Patrick’s best interests are, Ellen should consider:
“(a) the values and beliefs that the person knows the incapable person held when capable and believes he or she would still act on if capable;
(b) any wishes expressed by the incapable person with respect to the treatment that are not required to be followed under paragraph 1 of subsection (1) [as outlined above] and
(c) the following factors:

  1. Whether the treatment is likely to:
    1. improve the incapable person’s condition or well-being,
    2. prevent the incapable person’s condition or well-being from deteriorating, or
    3. reduce the extent to which, or the rate at which, the incapable person’s condition or well-being is likely to deteriorate.
  1. Whether the incapable person’s condition or well-being is likely to improve, remain the same or deteriorate without the treatment.
  1. Whether the benefit the incapable person is expected to obtain from the treatment outweighs the risk of harm to him or her.
  2.  Whether a less restrictive or less intrusive treatment would be as beneficial as the treatment that is proposed.”

Informed Refusal

Under the HCCA, Ellen has the right to refuse treatment, provided the decision is informed and is in her father’s best interests. When an SDM refuses or withdraws their consent to the nutrition treatment being proposed, dietitians must ensure that the SDM fully understands the implications of refusing or withdrawing their consent. This ensures the decision is truly an informed one.

In this scenario, the dietitian is fairly confident that Ellen’s decision to refuse the recommended diet is informed because she clearly explained to Ellen why the minced, thickened fluid diet was recommended and what the risks were for refusing the treatment. Within this discussion, Ellen indicated that she understood the potential consequences of refusing the treatment. She explained that her decision for requesting a regular diet was made in her father’s best interests, based on what he would wish if he had the capacity to make his own treatment decisions. The dietitian then clearly documented the details of the discussion with Ellen in Patrick’s medical record, including the refusal of the treatment being proposed.

Responsibilities of Long-Term Care Homes

Under the General regulation of the Long-Term Care Homes Act, 2007  the LTC home has a responsibility to ensure that residents are provided with food and fluids that are safe and nutritious. In addition to the LTC home’s responsibility to provide safe nutrition care, the home is also obligated to comply with the HCCA, which includes respecting the right of the SDM to consent to or refuse treatment, provided the SDM is acting in the resident’s best interests. Dietitians can help ensure the LTC home administrator understands the HCCA and the professional obligations of dietitians by sharing the College’s Standards of Consent.

Best Interests

The SDM indicated that her decision to refuse the recommended diet was based on quality of life considerations and what her father would want if he had capacity to make his own treatment decisions. The LTC home administrator indicated that putting Patrick on a regular diet would pose significant aspiration risk. Despite the contrasting diet order requests, the SDM and the LTC home administrator both cited that their decisions were based on Patrick’s best interests. However, under the HCCA, the authority to consent or refuse treatment lies with the SDM. If the care team is of the opinion that the SDM is not acting in Patrick’s best interests due to the high likelihood of aspiration risk, under s. 37 of the HCCA, they can apply to the Consent & Capacity Board for review. The dietitian can liaise with the health care team to determine whether a Consent & Capacity Board application would be warranted in Patrick’s situation. If so, the decision regarding Patrick’s diet order treatment would be made by the Consent & Capacity Board and/or an alternate substitute decision-maker for Patrick may be assigned. Health care teams should not be afraid to use this course of action to ensure the resolution lies with the Consent & Capacity Board.

Refer to the Consent & Capacity Board website for further details:

Collaborative Options for the Dietitian

In this scenario, it’s important to remember that long-term care is not delivered in isolation. The dietitian can collaborate with the care team, arrange for a family meeting and consult with an ethicist or the organization’s legal counsel (where available) to try and work through this scenario in Patrick’s best interests, taking into account considerations about quality of life and the concerns about risk. The team can refer to various resources such as legislation, standards of professional practice, and ethical decision-making frameworks.

 Take-Home Messages for RDs:

  1. Fulfill professional obligations for obtaining informed consent or refusal to the nutrition care treatment being proposed and document accordingly.
  2. Ensure the SDM understands their obligations under the HCCA.
  3. Ensure that the LTC home understands the HCCA and the dietitian’s professional obligations as outlined in the College’s Standards of Consent.
  4. Collaborate with the health care team in an attempt to implement the safest possible diet that respects the SDM’s right to refuse treatment.
  5. Collaborate with the health care team to establish if an application to the Consent & Capacity Board is warranted.
  6. Document the details of the interactions with all parties in striving to manage the scenario.