I first was confronted with making a decision about a family member’s care when my grandmother suffered an emergency condition that rendered her unable to make a decision and that was associated with overwhelming odds that she would not survive surgery.
My family had only a short time to decide whether to operate despite the odds, in which case, even if she survived, she was likely to have a protracted and difficult course, or whether we should provide her with comfort measures, given her long and full life. My family turned to me, the doctor in the family, for help in making the decision. I wish I had talked to grandma about her wishes before having to make that decision.
There have been subsequent family situations where I have been called upon for advice. I am glad that in these cases, I have had the discussion and I have known their wishes. I have had what I thought was going to be a difficult discussion with my teenage daughters, but found that when I asked them, “What would you want me to do if you were in a terrible car accident, with severe brain damage that was not reversible?” their answer was, “Don’t keep me alive, and be sure that you donate my organs if you can.”
My wife and I have had detailed discussions about life support, artificial feedings, organ donation, and even burial wishes. None of these discussions has been as difficult as I feared, and I am at peace knowing that my family knows what I would want and I know what they would want.
This is the subject of the report that follows by Chereen Langrill, part of our series on clinical integration strategies being undertaken by our SELECT Medical Network. I applaud SELECT for tackling these areas. Having these discussions now will save family members a lot of angst and perhaps guilt in the end. Trust me, I know.
Who would you want to make your medical decisions for you if you couldn’t make them any more?
It’s a deeply personal question, and a topic many people prefer to avoid completely. The Advanced Care Planning Clinical Integration Initiative aims to tackle that topic head on by educating providers to allow patients the opportunity and guidance necessary to discuss and document their preferences regarding future healthcare decisions. This process involves shared decision-making.
Why is it important?
Advanced care planning is ultimately about patient-centered medical care. Most of us have clear ideas about what we think is appropriate health care if we or a loved one is facing a critical care decision. What is frequently missed is the opportunity to have that discussion with our families and providers in a safe, transparent, and objective way.
According to a study published in the New England Journal of Medicine, elderly adults who had the opportunity to have quality discussions with their care providers regarding serious future medical decision-making were more likely to have a living will and durable power of attorney. Such discussions increase the likelihood that future medical decisions will be made according to someone’s wishes, even if they become incapacitated.
This and other studies show that communicating with patients about advanced care has many benefits. It builds trust and teamwork between the patient, provider, and their health care proxy if the patient is incapacitated, reduces uncertainty and anxiety, avoids future confusion and conflict, and gives the patient and family peace of mind.
We believe people have a right to participate in the planning of their health care. In addition, the Patient Self-Determination Act of 1991 requires providers to ask all hospital patients, including outpatients, about advance care directives. It is also required as part of the Medicare annual wellness encounter, which calls for providers to initiate a discussion about advanced care planning and to document that discussion.
Dr.Bill Bollinger, a local internist, is leading the Advanced Care Planning Clinical Integration Initiative for the SELECT Medical Network of Idaho, Inc. This initiative is focused on helping healthcare providers assist their patients in discussing and documenting their preferences regarding future healthcare decisions.
The goal of this initiative is to integrate advanced care planning into routine clinical care to lower barriers to discussions of prognosis and advance directives. Advanced care planning also is intended to facilitate patient-centered care by focusing on meeting appropriate patient needs throughout life.
This new view brings people and their medical providers into advanced care planning conversations during routine care or early in the course of a chronic illness. With this foundation, patients, their surrogate decision-makers, and their providers can make thoughtful and well-informed decisions when difficult situations arise.
What’s the challenge?
Imagine how you would feel if a loved one was unable to make their own healthcare decisions and had no living will and no clearly identified proxy to make those decisions on their behalf. Those critical decisions are difficult enough to make when a loved one’s wishes aren’t clear; they are even more challenging when made during a medical crisis.
Sometimes the challenge is determining how to start. People making important healthcare decisions don’t always know where to find resources to plan a living will or durable power of attorney, and sometimes their healthcare providers are not able to effectively facilitate these issues.
Ideally, this planning would occur before it is needed so that careful, thoughtful, and engaging discussions with key family members and other support can occur. That is why it is so important for providers to initiate a conversation before people need to make those choices.
Advanced care planning shouldn’t be an instance of “one and done.” It should be considered an ongoing process between the patient and provider, a conversation that continues to evolve.
What’s the goal?
The initiative’s goal is to help people gain control over their own healthcare decisions by giving them opportunities, tools, and the resources to plan their critical care decisions in advance.
How will it make a difference for patients? What changes will they see?
Patients should expect to have a conversation about advanced care planning during routine visits with their providers. They shouldn’t be alarmed when a provider initiates the conversation; this isn’t a conversation that should wait until someone reaches an advanced age or faces a health crisis. People who are young and healthy should begin thinking about advanced care now.
What are the next steps?
Providers in SELECT will be educated about how to identify communication styles with their patients, how to initiate an advanced care planning conversation, and how to assist patients and their support structures in completing advance directives.
Resources are being developed to share with providers throughout the SELECT Network. Those resources may include links to state laws about advance directives, downloadable documents, and online tips about how to have an advanced care planning discussion.
What’s the measure of success?
We expect to see advanced care planning discussions become a routine component in each patient visit. This is something that we can measure and track. Documentation of these discussions and the completion of advance directives will be an expected part of routine care. The only way to make this topic more comfortable is to bring it to the forefront and talk about it.
Editor’s note: This is the fourth installment of a 10-part series introducing clinical integration initiatives that St. Luke’s is involved in.
Clinical integration is a term used to describe health care providers working together in an interdependent and mutually accountable fashion to pool infrastructure and resources. By working together, providers develop, implement and monitor protocols, “best practices,’ and various other organized processes that enable them to furnish higher quality care more efficiently than could be achieved working independently.
St. Luke’s Health System is a participating provider in the SELECT Medical Network of Idaho, Inc. SELECT is a network of healthcare providers in southwest Idaho that is focused on a coordinated model of care delivery focused on providing enhanced quality and better value to individuals, employers, and insurers.
In keeping with the clinical integration effort, 10 initiatives were developed for 2013 to help establish the standards of enhanced quality meant to help create a new vision for health care.
The initiatives are:
David C. Pate, M.D., J.D., is president and CEO of St. Luke's Health System, based in Boise, Idaho. Dr. Pate joined the System in 2009. He received his medical degree from Baylor College of Medicine in Houston and his law degree from the University of Houston Law Center.