Consider this scenario experienced by many Canadians today. As a physician, what would you advise this individual to do next?
Mrs. Jones is 70 years old, recently widowed, and in generally good health. She tells you she had previously discussed her end-of-life preferences with her husband, but has not shared these wishes with anyone else, including her only son who lives in Australia. Mrs. Jones has a close relationship with a friend who lives nearby. She would like this friend to be involved in decision-making when she no longer has capacity to consent to treatment.
Conversations about end-of-life care can be difficult. Only half of Canadians discuss their end-of-life wishes with family or friends, and even fewer communicate their end-of-life care preferences to their healthcare providers.1, 2 However, a discussion between physician and patient about clinical care that is likely to be needed in the future may encourage a patient to articulate an advance care plan before it’s too late.
Treatment decisions for end-of-life care can be challenging, particularly when the patient is incapable of consenting and the patient’s wishes are unknown or unclear. This can increase the likelihood of disagreements and conflict between family members and within healthcare teams. Advance care planning (ACP) can reduce these challenges and risks, and help to improve the overall end-of-life experience for patients and their families.3
ACP is a process that includes the patient choosing a substitute decision-maker (SDM) and communicating his or her wishes, values, and beliefs to others. The goal of such planning is to ensure others understand the individual’s preferences for healthcare in the event he or she is unable to provide consent when needed. ACP helps ensure the patient’s wishes are respected and reduces the likelihood of conflicts between family members or with the healthcare team. It also allows healthcare providers to deliver care that more closely meets the patient’s needs and wants.
ACP is not a replacement for consent. While it can help guide decision-making, consent is still required for specific treatments. That consent may come from the patient if he or she is capable, or from an incapable patient’s SDM, or through an advance care directive, where permitted. It’s important to note that ACP cannot include consent to medical assistance in dying, either through an SDM or an advance directive.4
Advance care planning ≠ Advance directive
Advance care planning is not the same as an advance directive. Advance directives often include explicit instructions to consent or withhold consent to treatment in specific circumstances. They may also serve to formally assign a substitute decision-maker in the event the patient becomes incapacitated. In many provinces and territories, advance directives come into effect when the patient is incapacitated or otherwise unable to communicate his or her wishes.
Identifying substitute decision-makers
When a patient loses the capacity to consent, physicians need to turn to the appropriate person to obtain consent for end-of-life treatment. An SDM is an individual who has the legal authority to make decisions on behalf of the patient. This authority may be granted through a legal document, such as an advance directive, by legislation, or by the courts. In the absence of an SDM, when a physician incorrectly makes an assumption about who is authorized to make decisions on the patient’s behalf, this can lead to complaints to the hospital or regulatory authority (College) and potentially expose providers to civil legal actions.
Generally speaking, SDMs must comply with any wishes of the patient expressed orally or in writing when he or she was capable of making such decisions. The SDM should be guided by the patient’s best interests, and ideally there will have been a prior conversation between the patient and SDM about the patient’s wishes. The patient may also identify other people who can support the SDM through the decision-making process, or who should not be involved in care decisions.
In the example scenario described earlier, Mrs. Jones did not prepare a document concerning her preferences for care. Without such a document, her son would likely be appointed as the SDM, in keeping with the legislation. However, Mrs. Jones may not want her son to act as her SDM, for reasons that may include that he lives too far away, is not aware or does not agree with her final wishes, and so on.
Mrs. Jones’ doctor might choose to proactively discuss with her the importance of doing an advance care plan that specifies her care preferences at end-of-life should she become incapable of giving consent to treatment. This may include making legal arrangements to appoint someone—such as her close friend—who she feels will best represent her treatment goals, and her values and beliefs.
Discussing ACP with patients
Discussing ACP early and respectfully with patients and families can help promote person-centred care and assist in ensuring SDMs and family members support and follow through on the patient’s end-of-life wishes.
Introducing ACP as part of routine care in a physician-patient relationship can help normalize these conversations. Ideally, discussions about ACP should be ongoing and revisited with the patient as his or her medical condition evolves or significant life events occur.
Here are some tips to help get started:
- Obtain available tools to guide discussions about ACP with patients. The Speak Up Campaign, an initiative of Advance Care Planning in Canada, has helpful resources for patients and healthcare professionals at www.advancecareplanning.ca.
- Initiate discussions about ACP sensitively. You may need to introduce the subject during the course of multiple visits.
- Strive to inform your patient’s decisions about end-of-life care. Provide information about potential symptoms associated with end-of-life conditions. Discuss your patient’s preferences or concerns about specific treatments, such as resuscitation and intubation, so that any misunderstandings by the patient are corrected and apprehensions are mitigated.5
- Encourage patients to document and share their care plan with loved ones, their SDMs, and other healthcare providers.
The bottom line
- Advance care planning can reduce uncertainty and conflicts around difficult decisions during end-of-life care when the patient no longer has the capacity to consent.
- As part of routine care, consider discussing with patients the importance of having an advance care plan and appointing an SDM.
- Document discussions with your patients about advance care planning, and file any written documents concerning SDMs and the patient’s wishes in the medical record.
- Howard M, Bernard C, Tan A, et al. Advance care planning, Let’s start sooner, Commentary. Can Fam Physician. Vol 61 [Internet]. 2015 Aug [cited 2019 Feb 6]: 663-665
- Teixeira AA, Hanvey L, Tayler C, et al. What do Canadians think of advanced care planning? Findings from an online opinion poll. BMJ Support Palliat Care. 2015;5(1):40-7
- Heyland DK, Barwich D, Pichora D, et al. Failure to engage hospitalized elderly patients and their families in advance care planning. JAMA Intern Med. 2013;173(9):778-87
- Canadian Medical Protective Association [Internet]. Ottawa (CA): CMPA; 2018. Medical assistance in dying: Where do we stand two years later? [Modified Nov. 2018; cited 2019 Jan 30]. Available from: https://www.cmpa-acpm.ca/en/advice-publications/browse-articles/2018/medical-assistance-in-dying--where-do-we-stand-two-years-later
- Incardona N, Myers J. Advance Care Planning Conversation Guide—Clinician Primer. 2016. Speak Up Ontario. Available from: https://www.speakupontario.ca/wp-content/uploads/2018/07/ACP-Conversation-Guide-Clinician-Primer.pdf