I had the pleasure of connecting with Steve Byrne of Final Roadmap after my last article “End of Life Decision Making, Online” was posted two weeks ago. Below, he speaks on behalf of all three founders about Final Roadmap, its catalyst for creation, and how end of life decision making has changed over the past 50 years.
MedCrunch: Can you summarize Final Roadmap for our readers?
Steve: Our primary goal was to be focused on end of life decisions that can be anticipated well in advance of death, hopefully while people are young and healthy. Final Roadmap is committed to preparation as a source of peace of mind for individuals and those they love, we invite people to be organized and show them how. Our focus is on those decisions which can be anticipated and cause the most unnecessary pain and waste as we struggle to accept death as part of life. The fact that your research has uncovered so many relatively new online resources shows notable progress, but we have a long, long way to go. Final Roadmap was created for those people who want to be in control and are looking for a comprehensive planning tool to help them.
Final Roadmap’s mission is to encourage people to think about, document and share end of life wishes. Final Roadmap works as a web-based toolkit. It is straightforward as well as comprehensive, with sections for Medical Care, Legal & Financial, Physical Death, Visitation & Services, Messages for Loved Ones After Death and Notifications. In addition to a great deal of information, Final Roadmap contains many forms which can be completed and communicated. The concept is to allow end of life to be approached privately, simply and with total security. A person buys Final Roadmap once and keeps it forever, changing it as much and often as he or she desires and communicating wishes securely with others should he or she choose to do so.
Of the many benefits of Final Roadmap, the ability to share wishes with loved ones, providers and/or advisors is unique, we have never heard of another site that can do this. Members have the ability to allow others (Designees) to visit his or her Toolkit. Designees may view, but not change, the items to which access is permitted. Members have full command over which specific forms each Designee is able to view and receive a message any time any Designee views a document.
A Membership creates a personal digital vault, over which the individual has total control. Each section contains questions to consider, primarily in fill-in-the blank forms. Answering these questions prepares for the time when a person is unable to speak for him or herself, including after death. Information can be updated endlessly as life and wishes change. Any or all components can be communicated to others securely and with confidence. Any kind of media can be uploaded, i.e. videos, photos, documents. Everything entered into a Final Roadmap is encrypted, including the uploaded material.
Medcrunch: What was the catalyst for creating Final Roadmap?
Steve: This is an interesting question as we hadn’t considered the term “catalyst” in this context. Ultimately is was our founder completing a master’s degree in bioethics and being convinced, after much research, that nothing like she wanted for herself and those she loved existed in terms of an end of life planning vehicle.
Now, more than twenty years of noodling and conversation had already occurred. Two of our founders are life-long friends. As teenagers they realized and discussed the idea that “we suck at death”. Fortunately the two have become slightly more eloquent in the meantime, but the concept still holds. As one pursued law and the other healthcare they saw more and more evidence that the common emotional and financial damage simply isn’t necessary. After listening to countless conversation, the third partner volunteered to work full time on the idea if the other two were willing to stop talking and start doing.
MedCrunch: How have your collective experiences in healthcare and hospice influenced the mission of Final Roadmap?
Steve: Primarily through seeing countless situations that could have been prevented or mitigated by preparation.
In hospice, the most common thing we hear from families, next to accolades for the staff, is the anguish at not having spent the last days or weeks as they would have had they known death was imminent. They find themselves grieving and not knowing how to get money from a bank, frantically searching for papers and hoping someone at some point had gotten a clue about what kind of funeral the deceased wanted.
Hospital experience vividly demonstrates the best and worst of our healthcare system while magnifying the fact that as care becomes more complex, fewer people feel comfortable in the environment. Every fantastic discovery and technology has unintended consequences. At this moment, there are countless people who look very much alive but will never think, walk or swallow again. Pretty tough and perplexing if you are supposed to make decisions and don’t know the person’s wishes. So often we hear “Mom was a fighter. She would want everything done.” When the fight can’t be won and “everything” is painful and futile, not many moms, or dads, would really want it. We routinely see doctors in anguish as a family pushes for more and more medical intervention, hoping for a miracle. Or, doctors who proceed with interventions which are senseless, not understood by family members, and can deprive people of precious moments. Then there are the instances of fist-fights between siblings, lawsuits and other crazy and sad drama.
In essentially every instance, Final Roadmap could have prevented or solved the problems by arming people with the questions to ask and making it simple for wishes thoughtfully communicated, even halfway around the world.
MedCrunch: How has end of life decision making changed over the past fifty years?
Steve: Fifty years ago the notion of actually making end of life decisions was rare. Mechanical ventilation has only been common for a bit more than 60 years. Total parental nutrition (TPN) has been available only since 1968. Outpatient kidney dialysis did not become widely available until the 1970s. Fifty years ago, major surgeries were much less common today and those that existed often either succeeded or resulted in death. Chronic illnesses ran relatively predictable courses without the assistance of effective and prevalent drugs and devices. People got sick and ultimately stopped breathing. We did not have the means or mindset to combat death that we do today. Now, because we often have the means, and this goes for both healthcare providers and others, we have the mindset. The international bioethics community is fond of saying “Americans are the only ones who believe they are never going to die”. Many of advances in medicine have been truly fantastic and given people decades of quality life. Yet, with an ever increasing number of intensive care beds, we must constantly contemplate many decisions around end of life. Do we insert a feeding tube? Start dialysis? Do we withhold medicine? Deactivate a pacemaker?
So the decision making is exponentially more frequent and intense than fifty years ago, and indeed than five years ago. It is also more complex because multiple people are likely to be involved, all with their own agendas which may not be the patient’s wishes or best interest. Unfortunately, money can enter the story from the familial or healthcare provider perspective. Religious beliefs, compliance with laws and regulations, the unwillingness of anyone to start the difficult conversation all converge on end of life decisions which, in our view, should be made autonomously.
MedCrunch: What happens when people don’t make their wishes for end of life known?
Steve: Countless really sad things, unless they are incredibly lucky and die with all affairs in order, while asleep at home, with an intact and harmonious family. If that does not sound at all familiar, it because it is as rare as a unicorn. Some of “what happens”:
– The person with the dominant personality, or who threatens a lawsuit, gets what they want, which very often is not what the person would want. This leaves others, who often really do know better, with regrets, guilt and anger. Forever.
– Families are damaged irreparably because, in their effort to be loving and/or ”doing something” they fight among themselves, with multiple members insisting they knew what the individual wanted. This can be over medical care, who sings at the memorial service, who inherits the family business or who is the legal guardians of minor children. The resulting stories are not happy memories of a persons life, but who was right and who got what.
– People who didn’t want it get a lot of very invasive medical care and die in ways they did not want.
– Estates get depleted because money is spent, often on futile care. This can leave survivors without enough to live on.
MedCrunch: How can clinicians and medical staff benefit from the Final Roadmap toolkit?
Steve: Of course, they can use it for themselves and their loved ones. With patients, they can request that the forms pertaining to medical care are shared and become part of the patient’s medical record. The questions in Final Roadmap are very detailed, much more so than state POLST or Advance Directive forms. It allows physicians to act in a manner completely consistent with the Hippocratic Oath in “keeping patients from harm and injustice”. In addition, because most people will choose a lower level of intervention at the end of life and wish to die pain-free at home, Final Roadmap assists clinicians in allocating expensive resources wisely, and to those who really want and need them.
MedCrunch: How would you encourage people to discuss end of life planning with their loved ones?
Steve: Early and often – in the way most comfortable for them and those they love. In some relationships this will be frank, direct discussions.
In others, the conversation will be difficult, so we suggest a gentle request as an opener, perhaps in writing. For example, ”I know this is a tough topic, but I want to be able to count on you if I become unable to speak for myself. If you are willing, please let me know when we can talk.”
In many families and sets of friends, humor works. “I hear the death rate is 100%. Can we talk about mine?”
One of our partners has three children over the age of 18. She explained to them around the time of their 18th birthday that they were now adults in the eyes of the medical community and what that means. This is perfect because they are young and healthy and consider thinking about end of life as part of growing up.
We encourage anything that gets the conversation going, which is why Final Roadmap supports writing, talking, leaving printouts, or doing everything electronically. We know asking someone to be a Designee through Final Roadmap can be the initiating event. This works, but we suggest something a little less overt before they get that email.