Have you ever thought about what kind of care you would want if you were dying? Have you shared your thoughts and wishes for end-of-life care with the people you love? Would you want doctors and nurses to do everything they could to prolong your life?
To better understand the benefits of advance care planning, we posed three questions to Archna Patel, Clinical Nurse Specialist with our Freeman Centre for the Advancement of Palliative Care, Dr. Phil Shin, Chief of Medicine and Medical Director of Critical Care, and Maxwell Smith, Ethicist at North York General Hospital.
Archna Patel, Clinical Nurse Specialist, Freeman Centre for the Advancement of Palliative Care
Dr. Phil Shin, Chief of Medicine and Medical Director of Critical Care
1. How do you/would you explain the benefit of an advance care plan to a patient and their family?
Archna: I often explain advance care plans as an ongoing process that supports patients and families by clearly communicating a patient's health care wishes. These conversations are a key means to providing the best quality care because the advance care plan spells out the patient's goals, values, beliefs and treatment preferences. By encouraging these discussions we can help patients achieve the best quality of remaining life.
Dr. Shin: Conversations about what you would or would not want at the end of your life are difficult. It's even more difficult to have this discussion in the midst of an acute or critical illness, especially when a patient can no longer express their preferences. As a clinician, advance care planning provides a great starting point for families and patients to make decisions ahead of time, before they become acutely ill in the hospital.
Maxwell: I begin by explaining that we live our entire lives according to our personal values, beliefs, and goals (or at least try our very best to do so!). Our values are integral to decisions we make about where to live, what career to pursue, and whom to love. The importance of our values should also apply to the decisions that must be made about our care when we are at our sickest. Care decisions can profoundly impact our lives and should therefore be informed by our fundamental values and wishes. Advance care plans can ensure that our families and, ultimately, those who will care for us, can proceed with an understanding and appreciation of these values and wishes.
2. What's the most noticeable difference between caring for a patient and their family when there is an advance care plan in place, versus when there isn't?
Archna: There's definitely a noticeable difference between patients and families that have had end-of-life care conversations and those who haven't. When a patient has an advance care plan (ACP), or even if a patient has shared their wishes ahead of time, there is greater peace of mind for everyone caring for them, including the clinical care team. Families feel reassured knowing the decisions they make follow their loved one's wishes.
Maxwell: When patients are no longer able to make their own treatment decisions, in many cases families are left guessing what their loved one would have wanted. In both cases where an advance care plan is in place and where it is not, these decisions remain difficult to make. However, because advance care conversations and plans enable patients to express their values and wishes about their future health care decisions, it provides families with a bit more assurance that they are doing “the right thing” by respecting what their loved one would have wanted.
3. When should someone create their own advance care plan?
Archna: The earlier the better, but anytime is the right time for people to talk about advance care planning, whether you are sick or well. It's important to make a plan because the future is never certain— anything could happen at any time. We should all revisit these conversations if and when our health condition changes.
Dr. Shin: I definitely recommend having an advance care plan if you have been diagnosed with a chronic illness that may progress over time (e.g. diagnosis of serious heart, lung, or kidney disease or cancer). It's also a good idea to have a conversation with your primary care provider during an overall health exam because they can make suggestions on options to consider based on your health history. Recovering after a serious illness is a very good time to make or update your advanced care plan. Often after a hospital stay, you have a clearer sense of what type of health care support you would want if you couldn't communicate it.
Maxwell: I think everyone would acknowledge that advance care planning conversations can be difficult and awkward. It is imperative, though, to have these conversations well in advance of any serious illness, to have them often to ensure the evolution of our values and wishes are known, and to revisit these discussions when faced with a new illness or change in health status. It is important to recognize that our values and wishes change over time, and are certainly susceptible to change when our health status or quality of life changes. It's never too early to talk about advance care planning.
There are tools available to help you and your loved ones begin advance care planning.Learn more about the Speak Up Campaign at www.advancecareplanning.caand access tips and tools to get your conversation started.