Postscript to Professor Pope’s research into LSMT: ADs and surrogates

In the previous five posts, I discussed Professor Thaddeus Pope’s legal research on life-sustaining medical treatment (LSMT) and end-of-life medical care.  Two important points about advance directives (ADs) are not covered in Professor Pope’s treatise because they are not issues that are normally litigated.  They were suggested to me in earlier correspondence with my friend Gere Fulton, Ph.D., J.D., who, after retiring from the University of Toledo, served as Palmetto Professor of Clinical Internal Medicine at the University of South Carolina School of Medicine, where he taught “Law and Ethics of End of Life Care.”   He also was a member of the Core Faculty at the Center for Bioethics and Medical Humanities at USC.  Quoted material is from correspondence with him.

1.   “The term ‘advance directive’ includes both a living will and a durable power of attorney for health care, both of which can be either statutory or idiosyncratic.”  What Gere Fulton is pointing to is that it is not legally nor constitutionally required to use a state-prescribed AD, though it may have some advantages, mainly that physicians are familiar with the forms and may at least glance at what they consider relevant portions of them.  At any rate, we can, if we wish, write our own ADs.

Most statutes creating ADs also grant immunity to physicians who follow an AD.  For an example, see Texas Health & Safety Code, 166.044(a):

“A physician or health care facility that causes life-sustaining treatment to be withheld or withdrawn from a qualified patient in accordance with this subchapter is not civilly liable for that action unless the physician or health care facility fails to exercise reasonable care when applying the patient’s advance directive.”

In the U.S., we have a constitutional right (because of the liberty granted us under the Constitution) to produce our own ADs.  Because the Texas form is advantageous to my interests and values, I attach a Supplemental Directive to it and incorporate it into the state-prescribed form in a section labeled “Additional requests.”

2.  “Many of the early statutes specified that the living will would only be controlling if the declarant were either terminally ill or permanently unconscious.  That is the main reason why I have always cautioned against the reliance on a living will [directive to physicians] . . . and recommended the use of [a state-prescribed AD] as long as it is appropriately witnessed and/or notarized.” (Emphasis supplied.)

The Texas Directive to Physicians applies to a terminally ill person or one who has an irreversible illness (one that can be treated but not cured and requires a person be cared for or have decisions made for by another person).  For example, I don’t have to be permanently unconscious to have my AD followed by a physician in Texas.  For other states, look closely at the state-prescribed form or the statute to see if it limits its effect by requiring permanent unconsciousness.

Some personal experiences–ADs and clinicians

The suggestion, often made, that you should discuss your AD decisions with your physician, is not always useful advice.  For instance, though I am probably not typical because I have had five major surgeries (mostly related to the effects of arthritis) and several minor surgeries over the last three years.  I counted up the number of specialists I have received treatment from during this time:  four orthopedic doctors, two gastroenterologists, one colon & rectal surgeon, one urologist, one hematologist, two ophthalmologists, one ENT, two cardiologists, seven anesthesiologists (I had seven surgeries requiring anesthesia), one hospitalist, one podiatrist, and one emergency room doctor.   That makes 24 doctors, plus my primary care physician.  

I was not at the end of my life in any of these encounters (no terminal or irreversible condition from which I might die soon), and I had no loss of capacity except when anesthetized, so my AD was not really at issue, though I was asked whether I had one most of the time.  Of course, any time one is undergoing anesthesia, it is possible that one’s heart can stop.  At my age (74) and in my present physical condition, I wanted to be resuscitated should that happen.  I always had my spouse with me to speak for me if I couldn’t and she is my official surrogate named in one of my ADs. But there is nothing in my rather extensive directive to physicians that would have prevented resuscitation under the circumstances I faced.

But what if I were seriously ill and could die from my condition or conditions?   Likely, I would be taken to an emergency room where I would be seen by a doctor who knows nothing about my ADs and is unlikely to spend more than a few seconds listening to an explanation from me (if I were mentally competent at the time and conscious) or my surrogate, if she were available.  In such circumstances, a patient will likely not know the clinician who will provide medical care and treatment, so while advance communication with them would be beneficial, it is unlikely to happen.

I am not suggesting that we ignore talking to our doctors about our ADs.  What I am suggesting is that it is difficult to know which physician or physicians with which to have such a discussion.  Certainly, my podiatrist is not likely to care what is in my ADs.  The same may be true for the surgeon who replaced my knees and one hip.  Maybe it is worth talking to my primary care physician, but as I have suggested, that may be a wasted discussion.  And, of course, at the time I am at the end of my life, I may not have mental capacity, so the discussion will be up to my surrogate.  At the very least, everyone should execute an AD, so end-of-life directives can be known to any clinician who cares to know them; and if she understands Thaddeus Pope’s legal research, she should care!

AD Registries

Even in this somewhat confusing situation about which clinicians to talk with about ADs, it can be important to have one’s AD and any supplement readily available (perhaps in a colorful plastic envelope or a clearly-marked baggie): a copy at home, a copy in your car, a copy in your spouse’s car, a copy on a smart phone or electronic tablet, and a copy at an internet site accessible from a computer, if an adequate one can be found.  These are usually called an Advance Directive Registry (ADR).

A few states have advance directive registries (ADRs).  There are several private ones, including America Living Will Registry (ALWR); Choices Bank, which currently serves the city of Missoula, Montana; DocuBank; MyDirectives.com; and U.S. Advance Care Plan Registry℠.  

The U.S. Advance Care Plan Registry℠ is included as a benefit of membership in the Final Exit Network.  According to its website, the Registry stores all types of advance care documents, and makes them available to medical providers instantly over the internet as well as with two mobile apps–one for emergency personnel and one for registrants.

See, also, the pamphlet from the state of Maryland about the creation of a statewide AD registry here.

I haven’t used any of these services, so I have no personal experience with them.  MyDirectives.com charges nothing to store your directives, but any provider wanting the information must pay to access it, which is how the service makes money.  I am concerned that in many situations, registry access will not be satisfactory in an emergency, even if it is available.  Perhaps those who have personal experience using one of these services can let readers know how well the service works.

It is unlikely that it is useful to discuss with a specialist or surgeon your end-of-life medical concerns and decisions unless you are being treated for a life-threatening condition or you do not want to be resuscitated if your heart stops during a surgery.  I have had no such discussions with any of the specialists who have treated me these last three years, but I always have to allow or refuse permission to be given blood, should it be needed.

ADs and health care surrogates

I continue to believe that there are two essential elements for getting the end-of-life care you want: 

(1) Complete a directive to physicians (if using a state-provided living will form, note the warning above), and

(2) name a surrogate decision-maker who will be assertive, attentive to your health care, relentless in seeking the care you want, and is capable of being rude or obnoxious, if that becomes necessary.  

My behavior during the last three years of my dad’s Alzheimer’s involved all of the above characteristics and I was always successful in getting the care my father needed, though at a medical rehab facility I did bring one sensitive nurse to tears by merely suggesting she was being negligent in caring for my father.  There are times when being too civil is ineffective.  If you are fearful of upsetting someone, you may not be an appropriate surrogate.

A useful guide to being a health care proxy or surrogate for another, provided by the American Bar Association (ABA), can be found here. 

For those who cannot find any kind of health care surrogate, there may be hope in the creation of new organizations that can provide health care surrogacy through volunteers.  If neglected , abused, or endangered children can have volunteer Court Appointed Special Advocates (CASA), those in need of health care surrogacy would be able to find health care surrogates through similar programs.

Such services are available for some people who are disabled in some locations around the country, such as Stavros in Amherst, MA; and the program in Texas that provides volunteer surrogate services for those in programs that provide residential and habilitation services to people with intellectual disabilities or a related condition. 

I am not aware of a volunteer health care surrogates program, other than those for limited disabled populations, though there may be some around the country.  Based on my experience with end-of-life issues over the past 25 years, I believe it is a kind of service that could be (and probably should be) organized locally completely with volunteers, with guidance from the ABA, attorneys who work with elder populations, physician and nursing groups, social worker associations, chaplains, and others who have experience with end-of-life care.  

Volunteer health care surrogates are increasingly needed by elders and others nearing the end of life who cannot find surrogates.  Every time I give a presentation about end-of-life issues and ADs, someone or several people in the audience tell me that they cannot find a health care surrogate because they have no family left, or none close to where they live, or their friends are all too old to serve in a surrogate capacity.  We need service clubs, churches, affinity groups, and caring individuals to respond to this need in every locale around the country.