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Planning for and Providing Quality End-of-Life Care

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Approved by Council: September 2002
Reviewed and Updated: February 2006, September 2015, May 2016, September 2019

Companion Resource: Advice to the Profession

Other References:

 

Policies of the College of Physicians and Surgeons of Ontario (the “College”) set out expectations for the professional conduct of physicians practising in Ontario. Together with the Practice Guide and relevant legislation and case law, they will be used by the College and its Committees when considering physician practice or conduct.

Within policies, the terms ‘must’ and ‘advised’ are used to articulate the College’s expectations. When ‘advised’ is used, it indicates that physicians can use reasonable discretion when applying this expectation to practice.

 

Definitions

Advance care planning is the process of reflection and communication where people consider what sort of treatment they may want at the end of life. It includes the deliberation and communication of wishes, values and beliefs between the individual, their loved ones, their substitute decision-maker and their health care provider(s) about end-of-life care.1

Cardiopulmonary resuscitation (CPR) is a potentially life-saving intervention that is provided with the intention of reversing or interrupting a potentially fatal event (e.g. cardiac or respiratory arrest). CPR is often understood to include chest compressions, artificial ventilation and defibrillation.2

Potentially life-saving treatment is treatment that is provided with the intention of reversing or interrupting a potentially fatal event (e.g., cardiopulmonary resuscitation, etc.).3

Life-sustaining treatment is any medical procedure or intervention which utilizes mechanical or other artificial means to sustain, restore, or supplant a vital function essential to the life of the patient (e.g., mechanical ventilation, medically assisted nutrition and hydration, etc.).4

Palliative care is active total care that improves the quality of life of patients and their families facing life-threatening illnesses or life-limiting chronic conditions, with a focus on relieving pain and other symptoms and addressing psychological, social, and spiritual distress.5

Palliative sedation refers to the practice of relieving intolerable suffering through the proportional and monitored use of opioids and/or sedative medications to intentionally lower a patient’s level of consciousness at the end of life.6

Substitute decision-maker (SDM): A person who may give or refuse consent to a treatment on behalf of an incapable person.7

 

Policy

Quality Care and Communication

  1. When helping patients plan for or when providing end-of-life care, physicians must endeavour to understand what is important to the patient in order to ensure that the patient’s goals of care are understood and that quality care is provided.
    1. In doing so, physicians are advised to provide assistance to patients or substitute decision-makers (SDM) in order to help them articulate the patient’s goals of care.
  2. Physicians must communicate effectively and compassionately with patients and/or SDMs, in a manner and tone that is suitable to the decisions they may be facing. This includes initiating communication as early as possible and as regularly as is necessary to share information, helping patients and/or SDMs understand the information shared, and answering questions.
  3. Where patients and/or SDMs wish to involve family and/or others close to them in the patient’s care, physicians must obtain consent to disclose personal health information about the patient and document this decision.

Advance Care Planning

  1. As it is never too early for physicians to discuss advance care planning with their patients, as part of routine care physicians are advised to:
    1. discuss the importance and benefits of advance care planning, choosing an SDM, documenting and disseminating advance care plans to their loved ones, SDM, and health-care providers, and reviewing advance care plans throughout life; and
    2. help patients engage in such planning by providing necessary medical information and opportunity for discussion.
  2. When significant life events or changes in the patient’s medical status occur, physicians are advised to:
    1. encourage patients who have already engaged in advance care planning to review existing advance care plans; or
    2. where the patient has not already done so, remind patients of the importance of this process, create opportunities for discussion, and encourage them to engage in this process.

Consent to Treatment8

  1. Physicians must obtain valid consent before a treatment is provided.
  2. In order for consent to be valid, physicians must ensure it is obtained from the patient if the patient is capable with respect to the treatment or from the incapable patient’s SDM, and it must be related to the treatment, informed, given voluntarily, and not obtained through misrepresentation or fraud.
  3. Physicians are entitled to presume the patient is capable unless there are reasonable grounds to believe otherwise (e.g., something in a patient’s history or behaviour raises questions about their capacity to consent to the treatment). However, physicians are advised to exercise caution regarding this presumption in the end-of-life context and to reassess capacity as appropriate, because in this context the capacity to consent to treatment may be affected by a number of health conditions.

Palliative Care

  1. When proposing or providing palliative care, physicians must clearly explain what palliative care entails. This includes being clear that palliative care involves providing active care focused on relieving pain and other symptoms and addressing psychological, social, and spiritual distress related to the patient’s condition, which can be provided in conjunction with other treatments intended to prolong life, or when these treatments have been stopped.
  2. While palliative care does not have to be provided by specialists, physicians are advised to seek the support or involvement of specialists in palliative care and/or referral to hospice care9 where appropriate and available.

Potentially Life-Saving and Life-Sustaining Treatments

  1. Physicians are strongly advised to discuss potentially life-saving and life-sustaining treatment options as early as possible and where appropriate (e.g., a change in the patient’s medical status, where no further treatment options are available, or when a patient is admitted to an intensive or critical care unit).
  2. Physicians must involve the patient and/or SDM in the assessment of the treatment options that fall within the standard of care and must obtain consent to provide potentially life-saving and life-sustaining treatment, unless certain conditions are met during an emergency10.
  3. In instances where the outcomes of potentially life-saving and/or life-sustaining treatments are uncertain and physicians propose these treatments on a trial basis, physicians must be clear about the outcomes that would warrant the continuation of treatment and the outcomes that would warrant the discontinuation of treatment.
  4. Physicians must not unilaterally make a decision to withdraw life-sustaining treatment and must obtain consent in order to withdraw life-sustaining treatment.11
    1. As part of the consent process physicians must explain why they are proposing to withdraw life-sustaining treatment and provide details regarding any treatment(s) they propose to provide (e.g., palliative care).
    2. When consent is not provided, physicians must engage in the conflict resolution process as outlined in this policy, which may include an application to the Consent and Capacity Board.12
  5. Physicians must not unilaterally make a decision regarding a no-CPR order.
    1. Before writing a no-CPR order in the patient’s record, physicians must inform the patient and/or substitute decision-maker that the order will be written and the reasons why.13
    2. If the patient or substitute decision-maker disagrees and insists that CPR be provided, physicians must engage in the conflict resolution process as outlined in this policy and must not write the no-CPR order while conflict resolution is underway.
    3. If the patient experiences cardiac or respiratory arrest while conflict resolution is underway regarding the writing of a no-CPR order, physicians must provide all resuscitative efforts required by the standard of care, which may include CPR.14
  6. Decisions concerning potentially life-saving and life-sustaining treatment may change over time and as such, physicians must review these decisions with patients or SDMs whenever it is appropriate to do so (e.g., when the patient’s condition changes).

Aggressive Pain Management and Palliative Sedation

  1. When providing aggressive pain management15 or palliative sedation in order to address pain and symptoms and not to hasten death, physicians must provide treatment in proportion to the pain and/or symptoms the patient is experiencing and closely follow any changes in the patient’s pain and/or symptoms to ensure that appropriate treatment is provided.

Dying at Home

  1. When patients express a preference for staying at home as long as possible and/or dying at home, physicians must:
    1. help patients and caregivers assess whether home care and/or dying at home are manageable options, including assessing:
      • patient safety considerations;
      • the caregiver’s ability to cope with the situation; and
      • whether the patient can be provided with necessary care (e.g., whether round the clock on-call coverage is needed and available, whether home palliative care physicians or community based programs are available to assist, etc.);
    2. ensure that patients and caregivers are educated and prepared for what to expect and what to do when the patient is about to die or has just died; and
    3. ensure that caregivers are instructed regarding whom to contact when a patient is about to die or has just died.
  2. If the patient has also expressed a wish not to be resuscitated, physicians are advised to order and complete the Ministry of Health and Long-Term Care “Do Not Resuscitate Confirmation Form”16 and, if completed, must ensure that caregivers are instructed on the importance of keeping the form accessible and the necessity of showing it to emergency services personnel if they are called.17

Certification of Death

  1. A physician18 who has been in attendance during the last illness of a deceased person, or who has sufficient knowledge of the last illness must complete and sign a medical certificate of death immediately following death,19, 20 unless there is reason to notify the coroner.21
    1. Physicians must not rely on the coroner to certify the death when their involvement is not required.
  2. Physicians are advised to plan in advance by designating the physician(s) or nurse practitioner(s) who will be available to attend to the deceased in order to complete and sign the death certificate and to take into consideration any local or community strategies that are in place to facilitate the certification of death.22

Wishes and Requests to Hasten Death

  1. Physicians must respond to a patient’s wish or request to hasten death in a sensitive manner and be prepared to engage patients in a discussion to seek to understand the motivation for their expression and to resolve any underlying issues that can be treated or otherwise addressed (e.g., adjusting pain management strategies, referral for psychological counselling, getting other professionals (e.g., chaplain, social worker, grief counsellor, etc.) involved in the patient’s care, etc.).
  2. With respect to medical assistance in dying, physicians must comply with the expectations set out in the College’s Medical Assistance in Dying
  3. Patients have a right of access to their personal health information and physicians must release patient medical records or personal health information to the patient if they choose to explore medical assistance in dying, unless it is determined that an exception to this right is applicable.23

Managing Conflicts

  1. In order to minimize and/or resolve conflict that can arise regarding treatment decisions, physicians must:
    1. communicate clearly, patiently, and in a timely manner information regarding the patient’s diagnosis and/or prognosis, treatment options and assessments of those options, and the availability of supportive services (e.g., social work, spiritual care, etc.) and palliative care resources;
    2. identify misinformation and/or misunderstandings that might be causing the conflict and take reasonable steps to ensure that these are corrected and that questions are answered;
    3. offer referral to another professional with expertise in the relevant area and facilitate obtaining a second opinion, as appropriate;
    4. offer consultation with an ethicist or ethics committee, as appropriate and available;
    5. where appropriate, seek legal advice regarding mediation, adjudication or arbitration processes that are available; and
    6. take reasonable steps to transfer the care of the patient to another facility or health care provider as a last resort and only when all appropriate and available methods of resolving conflict have been exhausted. 24
  2. Physicians are advised to apply to the Consent and Capacity Board25 when:
    1. conflicts arise between a physician and SDM over an interpretation of a wish or assessment of the applicability of a wish to a treatment decision, or
    2. a physician is of the view that the SDM is not acting in accordance with their legislative requirements.
  3. Physicians who limit their practice26 on the basis of moral and/or religious grounds must comply with the College’s Professional Obligations and Human Rights

Documentation

  1. In accordance with the College’s Medical Records policy, physicians must document every patient and/or SDM encounter and all patient related information. In addition to these general expectations, in the end-of-life care this means physicians must:
    1. document references to discussions and decisions regarding treatment, goals of care, and advance care planning; and
    2. explicitly and clearly reference when a no-CPR order is in effect.

Organ and Tissue Donation

The Trillium Gift of Life Network Act27 sets out requirements relating to organ and tissue transplantation measures for health facilities designated by the Minister of Health and Long-Term Care. In particular, designated facilities have specific reporting obligations to the Trillium Gift of Life Network (TGLN) to ensure the patient’s family is able to be approached and affirm the patient’s donation decision or make a decision about organ and tissue donation on the patient’s behalf.

  1. Physicians working in designated facilities must comply with any policies and procedures established in accordance with the Trillium Gift of Life Network Act.
  2. Physicians not working in designated facilities are advised to:
    1. provide their patients with the opportunity to make choices with respect to organ and tissue donation, ideally in the context of an ongoing relationship with the patient and before any medical crisis arises;
    2. contact TGLN for more information and/or for materials or resources; and
    3. direct patients to TGLN for more information.28
 

Endnotes

1. Adapted from Ontario Medical Association, End of Life Terminology.

2. Adapted from Canadian Medical Association, Statement on Life-Saving and -Sustaining Interventions.

3. Adapted from Canadian Medical Association, Statement on Life-Saving and -Sustaining Interventions.

4. Adapted from University Health Network, Appropriate Use of Life-sustaining Treatment and Canadian Medial Association, Statement on Life-Saving and -Sustaining Interventions.

5. Adapted from World Health Organization, Definition of Palliative Care. http://www.who.int/cancer/palliative/definition/en/

6. Adapted from Ontario Medical Association, End of Life Terminology.

7. For more information on substitute decision-makers please see the College’s Consent to Treatment policy.

8. See the College’s Consent to Treatment policy for a more comprehensive treatment of physicians’ obligations with respect to obtaining consent.

9. In Canada, both palliative care and hospice care are generally used to refer to an approach to care focused on holistic care of the patient with a life-threatening or life-limiting illness and their family. However, some may use hospice care to describe care that is associated with a particular time period (e.g. final few days or weeks of life) or location (e.g. community based) (adapted from the Canadian Hospice Palliative Care Association).

10. For information on when emergency treatment can be provided without consent, please see the College’s Consent to Treatment policy.

11. The Supreme Court of Canada determined in Cuthbertson v.Rasouli, 2013, SCC 53, [2013] 3 S.C.R. 341 (hereinafter Rasouli) that consent must be obtained prior to withdrawing life-sustaining treatment.

12. In Rasouli, the Supreme Court of Canada determined that when substitute decision-makers refuse to provide consent for the withdrawal of life-support that in the physician’s opinion is not in the best interests of the patient, physicians must apply to the Consent and Capacity Board for a determination of whether the substitute decision-maker has met the substitute decision-making requirements of the HCCA and whether the refused consent is valid. See in particular paragraph 119 of Rasouli.

13. Physicians are advised that patients may not be aware of the limitations of CPR and the potential harms of this intervention and so are advised to clearly explain the reasons and clinical justification for not proposing CPR.

14. In Wawrzyniak v. Livingstone, 2019 ONSC 4900 the Court concluded that the writing of a no-CPR order and withholding of CPR do not fall within the meaning of “treatment” in the Health Care Consent Act, 1996, S.O. 1996, c. 2, Sched. A. As such, consent is not required prior to withholding CPR and physicians are only obliged to provide CPR in accordance with the standard of care.

15. For example, significantly high dosages of opioids.

16. For more information about the “Do Not Resuscitate Confirmation Form”, please visit: http://www.forms.ssb.gov.on.ca/mbs/ssb/forms/ssbforms.nsf/FormDetail?OpenForm&ENV=WWE&NO=014-4519-45 These forms can be ordered by completing and submitting the Ministry of Health and Long-Term Care’s “Forms Order Request”. For more information please visit: http://www.forms.ssb.gov.on.ca/mbs/ssb/forms/ssbforms.nsf/GetFileAttach/014-0350-93~2/$File/0350-93.pdf

17. Unless this form is completed and presented, emergency services are likely to use resuscitative measures and transfer the patient to hospital.

18. In limited circumstances a Nurse Practitioner may complete and sign the medical certificate of death instead of a physician.

19. Section 35(2) of the R.R.O. 1990, Reg. 1094, General, enacted under the Vital Statistics Act, 1990; R.S.O. 1990, c. V.4. The certificate must state the cause of death according to the International Statistical Classification of Diseases and Related Health Problems, as published by the World Health Organization, and be delivered to the funeral director.

20. Medical certificates of death can be obtained by contacting the Office of the Registrar General: 1-800-461-2156.

21. Section 10 of the Coroners Act, R.S.O. 1990, c. C.37 requires physicians to immediately notify a coroner or police officer if there is reason to believe that an individual has died: as a result of violence, misadventure, negligence, misconduct or malpractice; by unfair means; during pregnancy or following pregnancy in circumstances that might be reasonably attributed to the pregnancy; suddenly and unexpectedly; from disease or sickness for which he or she was not treated by a legally qualified medical practitioner; from any cause other than disease; or under circumstances that may require investigation.

22. For example, many communities in Ontario have an expected death in the home (EDITH) protocol in place that can be accessed through the local Community Care Access Centre (CCAC) or Local Health Integration Network (LHIN). In general, it is good practice for physicians providing palliative care at home to connect with local CCAC and LHIN palliative care resources.

23. Sections 1(b) and 52 of the Personal Health Information Protection Act, 2004, S.O. 2004, c.3, Schedule A.

24. In following such a course, the physicians must comply with the College’s Ending the Physician-Patient Relationship policy.

25. Physicians are advised that while consent is not required to withhold CPR, the Consent and Capacity Board has heard and ruled on conflicts pertaining to no-CPR or do not resuscitate orders and so may be a resource in instances where there is disagreement. See for example: Sibbald, R.W. & Chidwick, P. (2010). Best interests at end of life: a review of decisions made by the Consent and Capacity Board of Ontario. Journal of Critical Care, 25(1) 171.el-171.e7.

26. This may include, but is not limited to, refusals to provide care, withdraw care, and/or discuss care options.

27. Trillium Gift of Life Network Act, R.S.O. 1990, c. H.20 (hereinafter TGLNA).

28. For more information please visit the Trillium Gift of Life website (http://www.giftoflife.on.ca/). For general inquiries call toll free 1-800-263-2833 or for Referrals and Notifications call toll free 1-877-363-8456.