Practical advice on how to help patients and loved ones
Jan 24, 2022, By: Lauren Thomas
- Learn what advance care planning really is and really is not. Learn about it for yourself. Learn about it for your patients. Review resources specific to your province or territory — laws and language vary.
- Understand that advance care planning is not just for those who have serious or terminal illnesses, but also for healthy adults. Learn what healthy adults can and should be planning for. Engage with healthy adults in the advance care planning process.
- Appreciate the interdisciplinary nature and interdependence of disciplines throughout the advance care planning process, but take on a nursing leadership role. Mentor and coach your nursing colleagues. Nudge your physicians.
- “The point of beginning advance care planning conversations … is not to force premature decisions about possible therapies but rather for patients to identify a [substitute decision-maker] and articulate their values that others can later apply to in-the-moment decisions.” (Block et al., 2020, p. 1-2)
I was a brand-new nurse, working in a high-acuity surgical setting. I was standing at the bedside of a 91-year-old man, unconscious post-op, and the daughter says to me, “I have no idea what to do, we never talked about it. It never occurred to me.” I was dumbfounded as I stared down at a blank medical order for resuscitation status. Now what?
Advance care planning (ACP) is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal of ACP is to help ensure that people receive medical care that is consistent with their values, goals, and preferences during serious and chronic illness (Sudore et al., 2017).
ACP is a multifaceted concept that carries a heavy history of being misunderstood by most health-care professionals. Despite the ongoing evolution of ACP over the years, the myths that surround the subject have been perpetuated by many factors. For too long, ACP has been incorrectly seen as a conversation and planning for death and dying, and/or something that occurs within the four walls of a lawyer’s office.
However, most notable, from my perspective, is the fact that we typically learn what ACP is from colleagues who learned it from their colleagues. Very little is taught across all health professions, in university or later, by employers. And yet most of us begin our careers in acute care, which is where the “rubber hits the road” — our values are put to a practical test: there’s a crisis, and we need to make an urgent, life-altering decision.
How do we coach and support a person to apply their values to health-care decision-making? This question is riddled with complexity. It is influenced by societal cultural norms and a lack of partnership between the health and legal sectors.
- “When people think hard about their goals and values, they tend to make better choices.” (People’s Law School, 2019, p. 3).
Why nurses can’t ignore ACP any longer
We can’t ignore this opportunity for preparedness any longer. Having a plan in case of a health crisis is exactly what was presented to us at the beginning of 2020 when the COVID-19 pandemic started. We must capitalize on this opportunity. COVID-19 begs for the “I told you to plan,” “I wish my spouse had told me,” and “I wish I knew what my parents/siblings/children would want me to do” moments. But, you may wonder, how do we engage in this planning process?
Nurses are uniquely placed and skilled to do this work. We support people across the lifespan — healthy to life-limiting illness, and in all care settings. Nurses play a key role as the assessor/initiator, the educator/communicator, and the advocate. But as always, we first need to assess our own comfort and skill level: What do I need in my practice to support others?
- Get educated; you are likely missing some information.
Especially lacking is knowledge about laws that intersect with ACP: consent, substitute consent, and incapacity planning tools. Each province and territory differs.
What does the law have to do with ACP? Part of this process is identifying who would speak on behalf of someone if they couldn’t speak for themselves. As a registered nurse, are you checking whether you are getting consent from the right person, according to the law? And are you asking about legal planning documents and expressed wishes?
Supporting patients in choosing a substitute decision-maker should be a well-thought-out process. Who is good in a crisis? Who isn’t? Who is a strong advocate? Who isn’t?
Some provinces and territories have a legal hierarchy of friends and family that health-care providers must follow; some don’t. There are qualifications to consider and responsibilities to uphold. Advance Care Planning Canada offers resources and tools that can help you learn more about provincial and territorial specifics.
- Do it for yourself first.
There is no better way to guide another person and their family through the process than to engage in it for yourself. Think about your values. What brings your life meaning, purpose, and joy?
Learn about your own health. Find out what you can expect from any health conditions you may currently have.
We can’t ignore this opportunity for preparedness any longer.
Think about who would be a good substitute decision-maker if you couldn’t speak for yourself. Talk to your substitute decision-maker and the other important people in your life about your reflections and current health.
Record all this information in a way that works for you — video, audio, poem, letter, or legal document.
Support your patients and clients
Nurses can and should educate and advocate for greater attention to the ACP process. The following are a few key ways to support all adults.
- Just ask. Talk to people when they are young and healthy.
ACP is not just for the elderly and the sick. Nor is it a plan for the end of your life. It is a plan for your whole adult life that changes as you change. This is a proactive pre-planning time.
There are things that healthy adults can and should do to prepare. This is not about forcing people to make premature decisions about possible treatments. No one has a crystal ball to predict the future, especially of their health. But nurses can promote and support the process of having patients think about who would be a good substitute decision-maker, and support them in sharing information about their values with that person so they are prepared if the moment comes.
That said, there are some things that you can decide ahead of time. For example, if organ donation is important to the patient, encourage them to set it up.
- Help people understand what a new or chronic illness means for them.
Support your patients who have just been diagnosed with heart, lung, or kidney disease to ask and understand:
- What does my health condition mean for me and my life?
- What will my life look like six months, one year, or five years from now?
- What can I expect about my ability to function independently?
- What are some possible big changes in my health that I should be prepared for?
- What can I expect to improve if I choose this treatment? What are my other choices?
- What can I expect if I decide to do nothing?
- What happens when the treatments are no longer helping me?
Advocating to have patients ask these questions of their (potentially multiple) interdisciplinary teams creates clarity and confidence for the times ahead.
- Have difficult conversations; they’re essential and worth it.
Illness progresses. Once a person has moved into the last year or two of life, help them answer some key questions that can assist the health-care team in making medically indicated treatment recommendations that align with the patient’s values. Ask your patients:
- What are your most important goals if your health situation worsens?
- What are your biggest fears and worries about the future with your health?
- What gives you strength as you think about the future with your illness?
- What abilities are so critical to your life that you can’t imagine living without them?
- If you become sicker, how much are you willing to go through for the possibility of gaining more time (Ariadne Labs, 2017).
- Stop asking binary questions.
When we ask binary questions, we get binary answers. Asking “Do you want to be resuscitated?” or “Do you want us to resuscitate your loved one?” is not effective. Start with “Why are we getting you better?” Once we know that, and what’s medically indicated, the health-care team can make a recommendation and a patient-centred care plan.
Help people understand what is on offer (what is medically indicated) and what is not on offer (what is not medically indicated) and why.
- Break bad news. Just do it.
There is a place for all health-care professionals in conversations about the patient’s prognosis. This is a shared responsibility among colleagues and disciplines. Nurses are poised to help deliver this information in a way that is fitting to the illness the patient is experiencing.
Not every illness can be easily predicted. But we know when we see changes, and so does the physiotherapist, occupational therapist, pharmacist, dietitian, and social worker. We have an obligation to share that information with the patient (if they choose) and other care team members.
Block, B. L., Smith, A. K., & Sudore, R. L. (2020). During COVID-19, outpatient advance care planning is imperative: We need all hands on deck. Journal of the American Geriatrics Society, 68(7), 1395–1397. https://doi.org/10.1111/jgs.16532
People’s Law School. (2019). Planning for your future. https://assets.ctfassets.net/wzm83lc7g93q/1IBfXaELcQ16RIaoNYHgKI/e4590f51e78b44fe87a54696df37f6f1/booklet_-_planning_for_your_future_-_2019.pdf
Ariadne Labs. (2017). Serious illness conversation guide. http://www.ariadnelabs.org/resources/?fwp_areas_of_work=serious-illness-care&fwp_resource_type=download [login required].
Sudore, R. L., Lum, H. D., You, J., Hanson, L., Meier, D., Pantilat, S., Matlock, D., Rietjens, J., Korfage, I., Ritchie, C., Kutner, J., Teno, J., Thomas, J., McMahan, R., & Heyland, D. K. (2017). Defining advance care planning for adults: A consensus definition from a multidisciplinary Delphi panel. Journal of Pain and Symptom Management, 53(5), 821–832. doi.org/10.1016/j.jpainsymman.2016.12.331
Lauren Thomas, RN, BSN, is an advance care planning nurse clinician with Fraser Health Authority’s regional advance care planning team.