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Decision Making for End-of-Life Care: Guide for Patients and Caregivers

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The content in this resource is based on CPSO’s Decision-Making for End-of-Life Care policy that sets out expectations for Ontario doctors and the additional guidance in the Advice to the Profession: End-of-Life Care companion document. The relevant information has been summarized to help explain the kinds of decisions you, your substitute decision-maker, or in some cases, a doctor, may need to make relating to end-of-life care.

  • Substitute decision-makers (SDMs) are individuals who may give or refuse consent to treatment on behalf of an incapable person (i.e., someone who is not able to understand the information they need to make a decision about their treatment or able to understand the consequences of that decision or lack of decision). The SDM must give or refuse consent based on a patient’s most recent and known wishes. If the SDM doesn’t know the patient’s wishes, the SDM must act in the patient’s best interests.


CPSO acknowledges that thinking or talking about topics related to end-of-life care can be difficult, and we hope that this Guide can help alleviate some of the challenges of navigating issues that may arise. In each section of this Guide, there is a list of responsibilities doctors have and a list of things patients can do to help support decision-making for end-of-life care. 

When “you” is used in this document, it refers to patients. SDMs are also referred to where appropriate.

End-of-life discussions

There are two types of end-of-life discussions: advance care planning and goals of care discussions.

Advance care planning

Advance care planning discussions are conversations that take place to help patients identify their wishes, values, and beliefs, including which treatment(s) they may or may not want at the end of life. The aim of these discussions is to help prepare patients and SDMs for future decision-making.

What you can expect from your doctor

What you can do

Doctors who have sustained relationships with their patients (for example, your family doctor or a specialist that you regularly see) need to determine if it’s appropriate to start these discussions with you based on your specific circumstances and health status.

If your doctor does determine that it’s appropriate, they must initiate an advance care planning discussion, which includes raising end-of-life care issues with you and encouraging you to discuss these issues with your SDM.

It’s never too early for your doctor to start advance care planning with you. As part of regular care, doctors may discuss with you:

  • the importance and benefits of advance care planning,
  • choosing an SDM (for example, Power of Attorney),
  • documenting and providing advance care plans to SDMs and health-care providers, and
  • reviewing these plans periodically throughout your life.

When significant life events or changes in your medical status occur, doctors can also remind you of the importance of advance care planning and, if you’ve already engaged in the process, encourage you to evaluate existing care plans.

The external resources linked in this guide can help you and your SDM learn more about what advance care planning entails. It can also help you prepare for how to have these conversations with your doctor. In particular:

  • Advance Care Planning Canada’s Advance Care Planning Resources help you make appropriate decisions regarding your end-of-life care.
  • Advance Care Planning Ontario’s Online Advance Care Planning Workbook helps you learn about the advance care planning process, think about what’s important to you and how to involve your SDM, and provides information about Ontario law.
  • Dying with Dignity Canada’s Advance Care Planning Kit includes background information on determining and discussing your end-of-life wishes and how to appoint your SDM.

You can ask your doctor to talk to you about advance care planning if they haven’t already raised it with you.

You can also ask your doctor to confirm that your end-of-life discussions are referenced in your medical record and that these records are available to other providers involved in your care.

Goals of Care discussions

Goals of care discussions are conversations that happen when a patient is seriously ill and when treatment or care decisions will soon need to be made. These discussions can help inform which treatment options may be provided. 

It is important for doctors to take an active role in helping you or your SDM identify meaningful and realistic goals of care that seek to incorporate your wishes, values, and beliefs. You may need some help communicating these wishes, and doctors can help you engage in this process by providing necessary medical information and opportunities for discussion.

There are times when doctors will not be able to initiate goals of care discussions. For example, having these discussions may not be possible when a patient’s condition suddenly worsens. Situations like this highlight the importance of having these discussions as early as possible.

What you can expect from your doctor

What you can do

Doctors are expected (where possible) to start goals of care discussions with you or your SDM when you have a significant illness or disease and where your condition may soon get worse (for example, having a stroke). As part of these discussions, doctors must:

  • explain the illness,
  • provide education about the available treatment options,
  • help identify your wishes, values, and beliefs,
  • help build understanding around which treatment decisions need to be made, and
  • review the conversation whenever appropriate (for example, if there are any major changes to your medical condition).

Just like advance care planning, it’s never too early to learn about what goals of care discussions are and how to have them. The external resources linked in this guide can help inform and prepare you and your SDM for these discussions.

Withdrawing Life-Sustaining Treatment

Life-sustaining treatments are medical procedures or interventions that use mechanical or other artificial means to sustain or replace a function necessary for a patient to live (for example, mechanical ventilation to help a patient breathe or tube feedings to help a patient eat or drink).

What you can expect from your doctor

What you can do

Doctors must get consent from you or your SDM before withdrawing (i.e., stopping) life-sustaining treatment. As part of the consent process, doctors must:

  • explain why they are proposing to withdraw life-sustaining treatment, and
  • provide details regarding appropriate care or treatment(s) they plan on providing.

If the doctor believes that life-sustaining treatment should be stopped, the doctor must try to resolve disagreements about their proposal with you or your SDM in a timely manner.

  • The doctor can do this by discussing treatment options, clarifying misunderstandings, answering questions, and offering supportive services (for example, palliative care), among other things.
  • This includes supporting your physical comfort, as well as your emotional, psychological, and spiritual well-being (e.g., social work, psychotherapy, spiritual care, etc.), where appropriate and available.

You and your SDM can ask your doctor why they are proposing to stop life-sustaining treatment and to explain what will happen when they stop it. More questions that you and your SDM can ask are:

  • What is the outcome (i.e., what will happen) once life-sustaining treatment is withdrawn?
  • What other treatment will the doctor provide after life-sustaining treatment is withdrawn?
  • What other resources are available for support?

If a disagreement with your doctor cannot be resolved, they cannot stop life-sustaining treatment.

To help you understand what informed consent means and entails, you can read CPSO’s Consent to Treatment policy (based on Ontario’s Health Care Consent Act, 1996).

Withholding Resuscitative Measures

Resuscitative measures include several kinds of interventions that may be provided when a patient’s heart or breathing stops with the goal of making it start again (for example, cardiopulmonary resuscitation or CPR).

Do doctors need consent to withhold resuscitative measures?
A court decision (Wawrzyniak v. Livingstone) confirmed that doctors do not need to get the patient’s or SDM’s consent before deciding not to offer resuscitative measures or when writing orders to withhold resuscitative measures. Where the risk of harm outweighs the potential benefits, doctors may determine that resuscitative measures should not be provided and write an order to this effect in the patient’s medical record. We know that it may come as a surprise to learn that doctors are not required to get consent before deciding not to provide resuscitative measures, but this is really no different than when doctors decide not to offer other treatment (for example, surgery) because it would be medically inappropriate (i.e., not within the standard of care) to do so.

What is CPR? What are the risks and chances of success?
One of the most common types of resuscitative measures you may have heard of is CPR. While CPR is often thought of as something that is offered to all patients whose hearts stop beating or who stop breathing, it isn’t always medically appropriate. 

  • Although the media often portrays CPR as being effective and even something that people can get up and walk away from, the reality is that most people whose hearts stop beating do not survive, even with CPR. 
  • Moreover, CPR does not improve survival in a meaningful way for patients who have advanced medical conditions (like late-stage emphysema or cancer). 
  • Those who receive CPR and who do not survive may end up dying in an undignified and traumatic way. Families of these patients often feel distressed instead of reassured. 

The literature shows that patients do not usually know about or understand the risks and harms of CPR and that some patients or families may ask for CPR because they fear being abandoned. However, patients will continue to receive appropriate treatment and care, even if resuscitative measures are not provided.

What is an order to withhold resuscitative measures and why is it important?
An order to withhold resuscitative measures (“no-CPR, no intubation" order) is an entry in a patient’s medical record (or “chart”) which tells the health-care team that resuscitative measures should not be provided if the patient’s heart or breathing stops. If the patient’s chart does not have an order in it, the health-care team will assume that the patient wants to receive all resuscitative measures, including CPR. 

Having an order that clearly instructs the health-care team that resuscitative measures should not be attempted is important to avoid inappropriate resuscitative measures which can potentially cause harm to the patient and lead to unnecessary distress to family members.

While doctors legally do not need to get consent before writing an order to withhold resuscitative measures, doctors do have other professional obligations they must meet when writing these orders.

What you can expect from your doctor

What you can do

Before determining that resuscitative measures will not be provided because the risk of harm in providing those interventions outweighs the potential benefits, doctors must consider your wishes, as well as your personal, cultural, and religious or spiritual values and beliefs (if they can be determined and/or the doctor is aware of them).

To respect the importance of these decisions for individuals, before writing an order, the doctor must:

  • inform you or your SDM that the order will be written;
  • explain to you or your SDM why resuscitative measures are not appropriate, including the risk of harm in providing resuscitative measures and the likely clinical outcomes if you are resuscitated; and
  • provide details regarding appropriate care or treatment(s) they propose to provide.

However, sometimes, decisions need to be made quickly when a patient’s condition deteriorates rapidly, and so there is an exception to the above. Where there is an imminent need to write an order, doctors can write an order to withhold resuscitative measures in your record and then comply with the expectations set out above afterwards (e.g., they can inform you or your SDM after writing the order).

  • Doctors must still consider your wishes, values, and beliefs in these emergencies but do not have to discuss them with you or your SDM if there isn’t time to do so.

Where there is disagreement with your doctor about whether resuscitative measures should be provided, your doctor can still write an order but must support you in a number of different ways. This includes:

  • Providing you with all other care or treatment that is appropriate, such as palliative care, medical procedures that are indicated, and/or chronic disease management;
  • Supporting your physical comfort, as well as your emotional, psychological, and spiritual well-being; and
  • Offering a consultation with an ethicist or ethics committee about the writing of an order to withhold resuscitative measures.

You and your SDM can ask why resuscitative measures are not appropriate, including the likely potential harms and outcomes if resuscitative measures were provided.

  • You and your SDM can also ask for details about what other appropriate treatments the doctor is proposing to provide instead of providing resuscitative measures.

You and your SDM can learn about and be familiar with the potential harms of CPR.

You and your SDM can ask the doctor to get a second opinion if you disagree about whether resuscitative measures should not be provided, keeping in mind that this may not always be possible.

 

External Resources

Listed below are relevant provincial and national resources and guides to help support advance care planning and goals of care discussions with your doctor: