Advanced Care in Real Time

“I realize how difficult it is to anticipate and prepare for all possible scenarios. I pledge to trust myself, my healthcare agent, and my doctors to confer and make joint decisions in “real time” that most faithfully represent my wishes.”        

– From The Pledge

All Advanced Care Planning (or the lack of it) eventually takes place in “Real Time.” The simplest definition of Real Time: right here, right now… present tense. Despite any plan you may have, as long-standing and well intentioned as it may be, the reality of lying in bed at the end of life is bound to be different than you had imagined or planned for.

Dying Is Not Ideal

A valid criticism of Advanced Care Planning (ACP) and Advance Directives (the first, a series of discussions, the second a form of documentation) is that they often fall short of informing and directing our physicians at decisive moments.

Advanced illness can be chaotic and unpredictable. Therefore, our goals and preferences, some that are discussed, planned, and documented years in advance, often don’t match our actual experience, and as a result go by the wayside.

As our health declines and our prognosis shifts, we often change our minds about the care we’d prefer. We’re resilient and adaptable creatures, and as our circumstances change, so can our perspective and what we deem an acceptable quality of life. This is quite normal when the alternative is death.

Informed Consent  

Well-intentioned planning about the care we’d prefer, translates into Real Time through Informed Consent.

The ethical foundation of providing all medical care is by consent. It’s important to remember that every treatment or procedure, except for initial life-saving efforts, is conducted with our consent or with the consent of our healthcare agent. Being clear and well informed about what we’re consenting to is important.

The Patient Self-Determination Act (1990) was designed to encourage us to discuss, choose, and document the types and extent of medical care we would want, or not want, when we become unable to speak for ourselves, in Advance of such a time.

The weak link is that most of us don’t fully understand (or perhaps want to) the medical complexities of our condition, or the complexity of our modern healthcare system. Most of us trust our doctors to know what they’re doing and to fix the problem. This works well until our doctor encounters a problem or terminal condition that can’t be fixed.

How Does Real Time Look and Feel?

Much depends on the “set” and “setting.” Meaning, the mindset of the patient and surrounding loved ones, and the setting in which the care is being received.

Picture the difference between a person dying of lung cancer at home on hospice care, receiving prescribed medication for “air hunger” at 3:00am from their son or daughter-in-law… In contrast to a 911 dispatch at 3:00am, and an Emergency Room arrival with acute respiratory distress, due to advanced lung cancer.

At the hospital it’s normal for a patient or their agent to be handed consent forms for aggressive treatment in the throes of a life-threatening emergency. This can be the most difficult time to make such a choice. Often, it’s unavoidable. In such a case, Real Time can look and feel terribly stressful and uncertain.

The remedy to such an emergency is also found in real time when we stop today to consider what’s important to us and talk about this with our loved ones. Eventually we can then include our care team, who have the skills and responsibility to help us carry out either a long-standing plan or our current wishes.

There’s No Better Time than Now

To prepare may require confronting a clever adversary—the illusion that it’s too early to think about such matters. One of the realities of being a chaplain is witnessing undue suffering that perhaps could have been eased by more proactive conversation and informed decision-making before death is at our door. A prevailing truth: “It will always seem too early until it’s too late.”1

By realizing the possibility that we may not die in a place or by way of our choosing, we have a pivotal opportunity to think ahead, to talk it through and to affect the outcome. Why do so many of us die surprised and unready when we have years to prepare?

The most humane way to die, whether institutionalized or at home, is to anticipate it, and prepare for it as we would any significant life event. Beginning where we are. Recruiting help. Then bringing our experience, understanding, and hard-earned wisdom to the task at hand.

While we still can, we each have the right and the responsibility to determine ahead of time, and in real-time, what degree of aggressive treatment and/or life support we will accept, and for how long. If we hesitate to accept this responsibility and instead defer to our family or to our doctors, we risk “runaway” treatment that may not reflect our wishes.

Please note well: The ability of Advance Care Planning and Advance Directives to guide decision making at end of life is not a given. The successful interpretation and application of what we hold most dear rests on the quality of timely conversation and decision making between us (while we have capacity), our healthcare agent and our doctors. The clearer the conversation(s), the more coherent our care.

Preparing Ourselves and our Agent

As serious illness develops, two essential tasks come into play. First, preparing and educating ourselves. We need to clearly understand our medical condition, our treatment options, and how best to navigate the daunting realities of modern healthcare. Secondly, we need to prepare our agent to join us in communicating with the clinical team, and as needed, to advocate for us and share decision making.

In Real Time, we can ask our doctor(s) to explain the benefits and burdens of various treatments and procedures. We can learn about the range of interventions, from aggressive life support to comfort measures only. We can document our preferences and ensure that ourmedical documents are copied and on file with our doctor, agent, and at our hospital of choice. We can educate and prepare our agent to speak for us if we’re unable to.

Here’s What’s Actually Working

Leaders in the field of Palliative Care have identified the need for shared decision-making in real time between patient, agent, and the clinical team, as Job One! Given the myriad possible scenarios of how advanced illness can play out, and the fast moving, fragmented nature of Critical Care, this is perhaps the best investment of our time and attention. In this case, preparation, trust, and understanding between patient and their agent, forged through conversation, is irreplaceable.

Next Week’s Post: Initiating Conversations with Family and Clinicians



The content of this blog is for informational and educational purposes only. No aspect of its contents is intended to substitute for professional medical advice, consultation, diagnosis, or treatment. The author is a spiritual care provider, not a doctor. Always seek the advice of your physician or other qualified health care provider with questions you may have regarding a medical condition or treatment and before undertaking a new health care regimen. Never disregard professional medical advice or delay in seeking it based on something you have read here.


Feel free to leave a comment below or use the “Contact” page to tell me what’s on your mind and what you’d like to hear more about. If you’d like to forward this Post to family or friends, please click on one of the Blue Links below.

‘Safe Journeys, until next week –



  1. The Conversation Project: