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Advice to the Profession: Planning for and Providing Quality End-of-Life Care

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Advice to the Profession companion documents are intended to provide physicians with additional information and general advice in order to support their understanding and implementation of the expectations set out in policies. They may also identify some additional best practices regarding specific practice issues.

Patients are entitled to receive quality end-of-life care that allows them to live as well as possible until they die and physicians have an important role to play in both planning for, as well as providing end-of-life care.

The College’s Planning for and Providing Quality End-of-Life Care policy sets out expectations for physicians in these contexts. This advice document is intended to help physicians interpret and understand these expectations and provides guidance on how these obligations can be effectively discharged.

What is quality end-of-life care?

Quality end-of-life care generally aims to reduce suffering, while respecting the wishes, values, and beliefs of patients, and minimizing any conflict or distress that might arise. It also means providing care that manages not just the physical, but also the psychological, social, and spiritual needs of patients, while being sensitive to their personal, cultural, and religious values and beliefs.

But there are a number of both medical and non-medical factors that go into assessments of quality end-of-life care. Research and clinical experience show that what is important to patients and their families may often include:

  • managing pain and other distressing symptoms, including psychological issues;
  • avoiding the unnecessary prolongation of dying;
  • strengthening relationships with loved ones and continuing active social interactions;
  • attaining feelings of peace or closure, retaining a sense of control and meaning, and satisfying spiritual needs;
  • having trust and confidence in physicians who are readily available and take a personal interest in the patient’s care;
  • preserving dignity, being treated with respect and compassion and in a manner that affirms the whole person;
  • supporting decision-making through clear, honest, consistent, and timely communication and feeling listened to; and
  • receiving support through the grief and bereavement process.

When planning for and providing end-of-life care, physicians have an important role to play in helping patients or their substitute decision-maker identify meaningful and realistic goals of care that are compassionate, respectful, and that seek to incorporate patient wishes, values, and beliefs. This may take a bit of time and patients or their caregivers may need some assistance articulating these goals.

What role does communication play in providing quality end-of-life care?

Good communication is a fundamental component of a good physician-patient relationship and is even more important when providing end-of-life care.

End-of-life care situations can be highly stressful and difficult for those involved. Frequent and effective communication can help manage these highly emotional situations by building trust and confidence in the physician-patient relationship and it can help to relieve patient or substitute decision-maker anxiety and doubt in what is an otherwise challenging time. For these reasons, the policy sets out expectations for physicians with respect to communication.

What role can family members or others close to the patient play in end-of-life care?

Involving family and/or others close to the patient in the ongoing care of a patient may be beneficial. For example, it can help patients understand their diagnoses, prognoses, medications, the tests that are required, and the decisions they have to make about treatment options. It can also help family caregivers to provide more effective care and support at home and mitigate their own distress.

What are the benefits of advance care planning? What resources can I use or direct my patients to?

Advance care planning can lead to improved outcomes and quality of life, help to ensure that the care provided aligns with the patient’s wishes, values, and beliefs, and may even help encourage realistic treatment goals. While advance care planning does not constitute consent, it can be helpful in terms of informing treatment discussions and decisions.

The policy encourages physicians to take an active role in supporting their patients in advance care planning. This could include: asking general questions about their patient’s wishes, values, and beliefs; discussing specific issues such as preferences for the location of their death or attitudes towards certain interventions (e.g., resuscitation, mechanical ventilation, etc.); and, as appropriate, their wishes with respect to organ and tissue donation. These conversations may be difficult to initiate and patients may need multiple opportunities to discuss in order to engage effectively.

Speak Up (www.advancecareplanning.ca) has information intended for both physicians and patients and includes a workbook tailored to Ontario patients (http://www.makingmywishesknown.ca/get-started/).

What are rules for substitute decision-makers when it comes to giving or refusing consent?

The Health Care Consent Act, 1996 requires that substitute decision-makers give or refuse consent in accordance with the most recent and known wish expressed by the patient, while the patient was capable and was at least 16 years of age.  If no wish is known or the wish is impossible to comply with or not applicable to the circumstances, the substitute decision-maker must make decisions in the incapable patient’s best interests.

Wishes can be general or specific in nature and can be expressed in writing (including advance care planning document or an “advance directive”), orally or in any other manner.  Later wishes expressed while capable, whether written, oral or in any other manner, prevail over earlier wishes.  This is the case even if, for example, the earlier wishes are expressed in an advance care planning document.

Who can provide palliative care other than specialists in palliative care?

Palliative care focuses on relieving pain and other symptoms, as well as addressing psychological, social, and spiritual distress and can be provided at any stage of a patient’s life-threatening illness or life-limiting chronic condition. Many physicians, including most family physicians, may have the knowledge, skill, and judgment necessary to provide basic palliative care that aims to alleviate pain and keep patients comfortable.

How can physicians support good decision-making regarding potentially life-saving and life-sustaining treatments? How can a trial of treatment be beneficial?

Decisions regarding potentially life-saving and life-sustaining treatment can be particularly challenging, both for physicians and for patients or their substitute decision-maker. It is beneficial for these discussions to happen before events requiring a decision occur and so the policy strongly advises physicians to engage in these discussions as early as possible. It’s also beneficial for these discussions to be informed by advance care planning, reinforcing the points raised above.

There are also times where the outcomes of a potentially life-saving or life-sustaining treatment are uncertain. In these instances, proposing a trial of treatment allows for the exploration of a possibly positive outcome while building consensus about the circumstances where the care should then be withheld or withdrawn.

What are the legal requirements regarding no-CPR orders?

The Rasouli decision provided clarity regarding the consent requirements for withdrawing life-sustaining treatments. It did not, however, address whether the same requirements apply in the context of withholding CPR or writing a no-CPR order. In August 2019, the Ontario Superior Court released a significant decision specifically assessing whether the analysis and conclusions drawn in Rasouli apply in the context of withholding CPR and writing a no-CPR order. The decision was clear that the requirements are not the same – consent is not required prior to writing a no-CPR order and physicians are only obliged to provide CPR when doing so is within the standard of care.

The College has set our expectations in accordance with this decision and that emphasis the importance of good communication and conflict resolution when there is disagreement.

Does the College require that consent be obtained before writing a no-CPR order?

No, the College does not require that consent be obtained prior to writing a no-CPR order. Rather, the policy emphasizes the importance of good and early communication that aims to avoid last minute decisions and intractable disagreements. The policy also does not require that physicians propose a no-CPR order be written. Instead, it requires that physicians inform the patient and/or substitute decision-maker that the order be written and the reasons why prior to writing it. Physicians can be fairly straightforward and directive in doing so, while recognizing that this may be particularly difficult news for the patient and/or their family to hear. Only if the patient or substitute decision-maker disagrees upon learning that the order will be written must physicians engage in a conflict resolution process to try and find consensus.

What happens if there is disagreement about writing the no-CPR order?

If once learning that a no-CPR order will be written, the patient and/or substitute decision-maker disagrees and insists that CPR be provided, the policy requires physicians to engage in conflict resolution as outlined in the policy. During this time, physicians must not write a no-CPR order. However, if the patient’s condition deteriorates and they experience a cardiac or respiratory event while conflict resolution is underway, physicians are permitted to make a bedside determination about which resuscitative efforts, including CPR, to provide and are only required to provide those that are within the standard of care.

What is the role of the Consent and Capacity Board? How do I find more information?

The Consent and Capacity Board (CCB) is an expert tribunal, comprised of lawyers, psychiatrists, and members of the public and is supported by full-time legal counsel. The CCB has the ability to convene hearings quickly and has the authority to direct substitute decision-makers to make decision in accordance with a patient’s prior capable wishes or best interests. The Supreme Court of Canada has affirmed that the CCB is the appropriate authority to adjudicate disagreements between physicians and substitute decision-makers regarding the withdrawal of life-sustaining treatments. While consent is not required prior to writing a no-CPR order, the CCB has also heard and decided on cases regarding the withholding of CPR in the past and so may be a resource in instances of disagreement.

The CCB can also provide assistance when wishes are not clear, when it is unclear if a wish applies, or when it is unclear if a wish was expressed while the patient was capable or at least 16 years of age. The CCB can also grant permission to depart from wishes in very limited circumstances.

The CCB’s website (www.ccboard.on.ca) has information regarding their services. Physicians may wish to contact the CCB directly for more assistance or seek assistance from legal counsel, either from their institution or from the Canadian Medical Protective Association.

Am I required to certify the death of a patient when it would be difficult for me to do so (e.g., distance, length of time away from practice, outside of practice hours, etc.)?

By law, the medical certificate of death must be completed by a physician who has been in attendance during the last illness of a deceased person, or who has sufficient knowledge of the last illness. In limited circumstances, nurse practitioners are also able to complete and sign a medical certificate of death. When death is expected, the policy recommends planning in advance who will be available to attend to the deceased in order to complete and sign the medical certificate of death. The policy also advises physicians to take into consideration any local or community strategies that are in place to facilitate the certification of death. Where possible, planning in advance may help to overcome any practical challenges associated with completing and signing the medical certificate of death.

How do I obtain medical certificates of death?

Physicians are now able to access digital versions of the medical certificate of death online in both English and French. The PDF can be filled electronically and then printed and/or saved to support completion of this important legal obligation. You can still order blank hard copies of the medical certificate of death via phone, fax, or mail from the Office of the Registrar General if you’d prefer.

How should I respond to a request to hasten death?

A patient’s wish or request to hasten death may be a genuine expression of a desire to hasten their death, but it may also be motivated by an underlying and treatable condition such as depression, psychological suffering, unbearable pain or other unmet care needs. Patients may also be attempting to exert control over their lives, expressing acceptance of an imminent death, or seeking information about any options that may exist. For these reasons, the policy requires physicians to respond to these requests in a sensitive manner and to be prepared to engage patients in a discussion to seek to understand their motivation. In some cases, this discussion might reveal ways in which their care can be adjusted to help alleviate the underlying issues. Patients may also be seeking information about medical assistance in dying and physicians should consult the College’s Medical Assistance in Dying policy for more information.

Where can I find or direct patients to for more information about organ and tissue donation?

Physicians and patients can visit the Trillium Gift of Life Network’s website for more information on organ and tissue donation in Ontario. The website also includes a link where patients can register to become a donor.