Allow Natural Death

Archive for March, 2011

Thinking about Systems

As I said in yesterday’s post, I intend to talk about my aha moment after learning how end of life decision making is accomplished at the hospital in Texas that was the first to transition from DNR to Allow Natural Death. Here is a portion of that post;

“Here’s how end of life planning discussions work at St. David’s, the very first facility in the US to change DNR to Allow Natural Death. (As soon as I get her permission I will share the name of my source.) When a patient is hospitalized and it is discovered that a grave condition exists that may require a change in the care plan of that patient, a conversation takes place where the physician shares that news with the patient and their loved ones. At this particular facility, a representative of the Pastoral Care staff will then meet with the patient and/or their loved ones to decide what type of plan of care they would like to put in place.”

It may seem not at all significant to you that this is how things work at this facility, that a clergy person would be the staff person responsible for the discussion, negotiation, and decision making that will result in a DNR or an Allow Natural Death or a Comfort Measures Only Order for care.  But to me it is vastly different than any system I have ever observed. I have always worked in teaching hospitals in the Northeastern part of the US. I have never seen a member of the clergy whose task it was to initiate discussion or decision making re: DNR or ….? Really… this was just not done. This task fell to the least experienced physicians on the medical team, along with varying amounts of involvement by a Care Manager. Never, was the job(or privilege) of deciding death and dying questions led by a member of the pastoral care staff. This has been my experience. I would love to hear other stories of how this works from those of you who have them to tell.

I describe myself as a systems thinker with a front line focus. Systems are really important to me. If I look at them closely I can begin to understand  why things are the way they are, and more importantly …do they really need to stay that way? Here’s how I think about systems: Whenever we try to do anything we are bumping in, out, and around any number of systems. Like brushing our teeth. We do it as a member of a group,(family member, roommate) who must assemble the proper tools (toothbrush) and supplies (water, toothpaste) in the right place at the right time with the ability to perform the task. This involves all those systems(factories, municipal public works operations) that did their jobs to get goods and services to you in order that you could ride your bike to buy the goods with the money you made from the work you do to accomplish the tasks that your job performs so you can negotiate some sink time with your spouse and kids. ….and on and on it goes.

Systems thinking means looking at the various parts that make up the whole of any effort to make things work…or not. We operate within the system of our families and within all the organizations that have some small effect on our lives. We are in the midst of a very complex system each time we interact with a health care provider. A hospital is a system where the complexity required to make things come together in such a way that a patient is safely and successfully treated is astonishing. Sometimes it is amazing that it works as well as it does. If I listed the steps needed to identify correct lab results from blood tests of a given patient, and to do it in a timely manner, your eyes would quickly roll up in your heard…it would be too much.( This is only one example and not meant to disparage those who work on phlebotomy teams and labs.) The complex steps that are taken to get from point A to point B are in play all over the place in a health care facility. Systems, systems everywhere…and if something goes wrong in getting the proper care to a patient in a timely manner, then the system needs to be looked at…each step and part of that whole to find the part that doesn’t work. And CHANGE it.

The systems that define the practice of decision making at the end of life is one of the most complex ones. We will try to deconstruct it tomorrow.

A lot to think about

I know I have been stingy with the words the past few days. I have felt uninspired when I sit down to write.  This has happened before and happily, something has come along to reinvigorate me when it comes time to write about my commitment to the concepts of allowing natural death. When I am not writing I am reading, talking to folks and thinking about why this movement is so important and how best to promote it. The most important aspect of that effort is to advocate change of the Do Not Resuscitate(DNR) order that is now used in hospitals to the words Allow Natural Death.

This week I spoke with a person who has made me think in a whole new way, about the change from DNR to Allow Natural Death and, more importantly, the systems that are in place to facilitate the conversations and shared decision making that must be accompany it. To learn more about this, I have tried for a long time, without success, to speak with Reverend Amy Donahue-Adams. She is the person who championed the DNR to Allow Natural Death transition after the sudden death of  Reverend Chuck Meyer. Reverend Meyer first proposed the change at St. David’s Round Rock Medical Center in Austin, Texas in the mid-nineties. I have continued to try to reach her every few months and still no luck. BUT… this week I spoke with the Director of the Pastoral Care at St. David’s and my head has been spinning ever since. The implications of how end of life discussions take place in her facility, have almost entirely changed my vision of how this system would look in practice. And here’s why….

Here’s how end of life planning discussions work at St. David’s, the very first facility in the US to change DNR to Allow Natural Death. (As soon as I get her permission I will share the name of my source.) When a patient is hospitalized and it is discovered that a grave condition exists that may require a change in the care plan of that patient, a conversation takes place where the physician shares that news with the patient and their loved ones. At this particular facility a representative of the Pastoral Care staff will then meet with the patient and/or their loved ones to decide what type of plan of care they would like to put in place. This information set off many high wattage light bulbs for me. I am still thinking about it and will talk more on this tomorrow and the next day and the next day…..and as long as it takes.

living

You may die when you are 100 years old.

You may die tomorrow.

You must live somewhere in between.

Assisted Suicide/Death with Dignity won’t help

I have remained uninvolved in the work of seeking change in the form of Assisted Suicide/Death With Dignity/Voluntary Euthanasia. Though I do absolutely support another means of providing choice to those at the end of their lives, this option would be of little help to those whose situations I speak about here. As it stands now, in order to take advantage of the new legislation (assuming that it is passed) it would be necessary to find two doctors who would agree that a person has six months or less to live. This is the same amount of time that is required in order for a physician to endorse a hospice level of care. And I already know that many doctors are reluctant to even do that.

Guidelines exist to assist physicians in this endeavor by outlining conditions that must be present to be eligible for the  Medicare Hospice benefit. These are not inclusive of the cancer diagnoses which trigger an easier identification with impending death thus making it easier to earn a hospice referral. For some of my elderly acquaintances who strongly oppose the possibility that they will be hospitalized, fear sets in when memory begins to fail. This is a signal that mental clarity will be questioned and inconsistent responses will be construed as “lacking the capacity to make important decisions”. For those with dementia this is the danger zone when control of one’s own life is very much at risk. For those whose family members are reluctant to discuss or to take seriously or to agree with a loved ones plan…this truly is the end of life as they have known it.

It is a sad commentary on our medical model of care that an elder who wishes to avoid the prolonged death that institutions have to offer is forced to stop eating and drinking. I have known persons who have made this choice and then struggle to know when they should undertake this tremendous effort …before they forget their resolve. This seems wrong to me. I have just begun to read a book by an Australian author, Rodney Syme, entitled A Good Death. The foreword of this book is written by Pamela Bone who states that there is “a sense of the inevitability of change: that those individuals who would impose on others  – even those who do not share their religious convictions – the unwanted prolongation of life in futile and undignified circumstances will increasing be seen to be acting invalidly.” Here Here.

Thank you, Mark Penn

Mark Penn served as chief adviser to the presidential campaign of Hilary Clinton. He served in that capacity on Bill Clinton’s re-election campaign and is considered a “perceptive pollster in American politics.” In 2007 he wrote, Microtrends , a book that gave me another ounce of hope that the Allow Natural Death model of end of life care could be possible.

Penn says that microtrends influence business, politics and our personal lives and that it only takes one percent of the public, or three million people to make one. He claims that this relatively small group of people is enough to launch a business or a social movement. One of the microtrends that he identifies is those Americans who he calls DIY Doctors or Do It  Yourself Doctors. He sees a couple reasons for the development of this group and one is the ability to access information, medical and otherwise, on the internet. This has encouraged those of us who insist on being in partnership with care providers to be better informed partners in that effort. Admittedly, this knowledge is not always accurate and not always appreciated by our physician partners.

Another factor contributing to the DIY Doctor microtrend is the decreasing confidence of Americans for medical institutions. Since 1966 the level of confidence has dropped from nearly 80% to around 30%. The reasons for this drop are aired in the media on a regular basis: counterfeit drugs for sale, medical errors that kill 100,000 persons a year, hospital acquired “super bugs”, drug production factories closed for faulty practices, drugs removed from the market when serious and harmful side effects are  discovered …the list goes on with a new incident weekly. It is not surprising that the number of folks choosing to go it alone is rising.

If only one percent of the population can launch a social trend then maybe it can be the group of DIY Doctors who will demand a less medicalized end to their lives. Maybe they will be the ones who look at the data and decide that what they most want from their doctors is to be allowed a natural death. Maybe they will refuse to be taken to a hospital and will keep looking until they find a way to obtain a home DNR to put on their refrigerator just in case. Maybe they will process medical information with enough skepticism to realize when life is merely being prolonged, but not imbued with sufficient quality to pursue further treatments. Maybe they will find ways to avoid altogether the domains of medical care when death is near.

If the number of people demanding a more dignified death grows to a critical mass of three million then maybe we will be able to easily allow natural death without having to fight to do so. Allowing natural death could be a social movement that will give the majority of us the kind of DIY death that we choose…not the one that medical organizations choose for us.