There’s been an important development in planning for the end-of-life.
In October 2021, three preeminent leaders in the Palliative Care field: Sean Morrison, MD; Diane E. Meier, MD; and Robert M. Arnold, MD, boldly questioned the relevance of Advanced Care Planning (ACP) and the Advance Directive.
In their opinion piece entitled, “What’s Wrong with Advance Care Planning?”, these doctors, whose medical specialty is most closely aligned with Advance Care Planning (ACP), took a significant departure from the status quo.
Advance Care Planning and Advance Directives
Since the Patient Self-Determination Act of 1990, Advance Care Planning (ACP) and its workhorse, the Advance Directive, have been widely used and promoted to maintain autonomy and to have a say in the care we’d prefer at end of life.
Over the past 30 years this model has become the most familiar communication tool in working with seriously ill patients and their families.
In speaking recently with Dr. Arnold, he acknowledged the diverse response that he and his colleagues have received. Praise, for summarizing a multitude of studies which show little correlation between care received at end-of-life and what was requested in the Advance Directive… And criticism, for calling a foundational component of end-of-life care into question without expanding upon an alternative model.
Dr. Arnold noted, “Mind you, we’re just reporting what the research has been saying for years. We’ll have more to contribute in the near future.”
In fairness, the authors highlighted two essential tasks: first, for each of us to identify, appoint, and prepare a trusted Healthcare Agent. (See recent Post)
And secondly, to diligently focus on improving communication and decision making in “real time” between clinicians, patients and their agents. (This will be a separate Post next week)
Two Essential Tasks Going Forward
Choosing and enrolling an appropriate Healthcare Agent is Job One.
For many of us, an immediate family member fits the bill. For others, a trusted friend may be a better choice.
Once enlisted, preparing our trusted agent to speak for us someday is a separate task and usually a gradual process. Best to begin sooner than later to identify and to coach this key person.
Our agent may initially feel hesitant to accept responsibility for such important decisions. While this is normal, it needs to be addressed and redirected.
In truth, we’re empowering our Agent to communicate our wishes. It is of lasting importance to reaffirm that ideally the patient is the decision maker. The Agent is a spokesperson.
In the event of a serious illness the second essential task comes into play: preparing our Agent to advocate on our behalf. Our agent joins us in communicating with the clinical team, and as needed, helps us make joint decisions in real time. (Be sure to check out next week’s Post)
So, Why is Advance Care Planning Not Working?
In explaining the Advance Directive’s shortcomings, Dr’s Morrison, Meier and Arnold, outlined 8 essential steps required for an Advance Directive to provide a successful or “concordant” outcome. Here’s what it takes for the patient’s care to be aligned with their Advance Directive:
- The patient must first clarify their values and goals for future treatment and identify which treatments are acceptable or not, for example, to accept CPR and Intubation / Ventilation, or not.
- Often, clinicians need to educate their patients about such procedures.
- The patient’s choices need to be well documented, signed and witnessed.
- As needed, the document(s) need to readily available and / or the patient’s Agent needs to be on call to help guide clinical decisions.
- As needed, the Agent will speak for the patient and guide medical decision-making in keeping with the patient’s previously stated values and preferences.
- Attending clinicians will have read the patients documents and take them into account while communicating with the patient’s Agent.
- The patient’s previously expressed wishes will be honored by clinicians and Agent.
- The hospital is committed to delivering care that’s in keeping with the patient’s expressed wishes.
If we lose the capacity to advocate for ourselves at any point (which occurs for 8 out of 10 patients) then a lot has to fall into place for us to receive the care we’d prefer. You can begin to see how the promise and expectations we place on Advance Directives often fall short.
“Here’s What Matters Most To Me”
Preparing our Healthcare Agent to be our spokesperson is still an essential task.
Unfortunately, this “preparation” often falls short, leaving our Agent unsure of how to proceed. Please avoid the common pitfall of handing your agent important paperwork and saying, “file this away, and hopefully you’ll never need it.”
The best preparation: a series of in-depth conversations under the heading: “This is what’s important to me.”
Here’s What’s Actually Working
Dr. Morrison and company identified the on-going need for shared decision-making in “real time” between patient, agent, and the clinical team.
Given the uncertainty of how advanced illness can play out, this is perhaps the best investment of our time and attention.
In this case, a genuine trust and understanding between the patient and agent can make all the difference. In the ICU where I work, this has become the new normal.
Next Week’s Post: “Here’s What ‘Real Time’ Can Look Like.”
A MEDICAL ADVICE DISCLAIMER
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.
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‘Safe Journeys, until next week –
DSW