A Personal Odyssey: Preparing for the Worst

I have been spending my weekends visiting my hospitalized, dying, 80-year-old aunt. There would be little worse than not to be present to say goodbye.

I realize all of us ultimately meet this same fate, but not necessarily in the same way. In my aunt’s case, she has stage IV ovarian cancer that has spread widely. The cancer is complicated by other lifelong ailments. The scenario is not good, the end already written; it is not if, but when.

But in visiting with her I learned just how unprepared she and my 88-year-old uncle are to deal with these times, which made me wonder how prepared my colleagues are. I know that as unprepared as my aunt and uncle are, my wife, Carolyn, and I are prepared. By prepared, I do not mean ready to face the ultimate call. Rather, I mean prepared in case of a medical emergency. I am referring to living wills, healthcare proxies, and membership in an organization like MedicAlert.

The documents (living will and healthcare proxy) may be called something else where you live, but the function — and importance — remain similar.

A healthcare proxy is your designation as to who is to make medical decisions on your behalf should you not be able to make those decisions yourself. The usual order is a spouse/significant other, followed by an adult relative, but it doesn’t have to be. The people you name can be anyone you trust to carry out your wishes. The only caveat is that in most places the responsibility is singular, it cannot be joint. What I mean is, you can name your spouse and if your spouse can’t or won’t serve at the time, then your adult child can become your proxy; what you cannot do is give your spouse and adult child joint responsibility, requiring them to agree on the care to be given. The reason is that there may be disagreement and thus no decision.

The key is knowing what care you want or are willing to accept (e.g., feeding intubation vs. no feeding intubation) and communicating that information to the people you designate as your proxies. In my case, I have sat with my proxies and my doctors and repeatedly stated what care and treatment I want and do not want — I have “hammered it home” so that there is no misunderstanding.

I do understand that expressing my wishes does not ensure that my proxies will follow my wishes. But when it comes time to make decisions, they will be able to weigh my desires as part of the decision-making process — more importantly, I will have relieved them of the burden of trying to guess what I desire and wondering if they have made a wrong decision.

My aunt and uncle have declined over the years to create and execute these documents. Their reasons have been many, but the biggest factor was a fear of losing control. There is no loss of control; the proxy becomes the decision maker only when you are incapable of making a decision. In the absence of the healthcare proxy, it is the doctors and care facility management that will make the decisions. They may ask for family input, but they will do as they please. This I know from personal experience.

Along with a healthcare proxy, which names your proxy decision makers (i.e., the named proxies become you for this purpose) in your preferred order, the prepared person also has a living will. The living will is an instrument that outlines the care you want or don’t want, as well as my end-of-life care choices. In my case, for example, my living will spells out the boundaries of my Do Not Resuscitate (DNR) request and indicates which intubation procedures I approve and which I decline.

The living will is your taking possession of your medical treatment. Do you want anything and everything done for you that might, no matter how unlikely or how great the pain and expense, extend your life, even for only a few weeks, or are there limits you want enforced to such treatment? Having a living will — and making a point to review it every couple of years — forces you to evaluate your current medical condition and your current views on treatment. Neither the Healthcare Proxy nor the Living Will are written-in-stone documents. You can revoke or change them at any time.

Most states offer fill-in-the-blank forms online, along with instructions for these forms, but the best method is to visit with a lawyer.

The third part of being prepared is membership in an organization like MedicAlert. I know that medical alert bracelets and necklaces can be bought in any drugstore, but they are inadequate. I have been a member of MedicAlert for decades. I consider it one of the best investments in personal safety that I have made.

In addition to being able to choose the kind of identification I want to wear (I now wear the silicone bracelet and carry the medical ID keychain; Carolyn wears a different bracelet but also carries the keychain) and the information I want engraved on the ID, MedicAlert lets me keep my medical information online.

More important, however, is that I have a unique member identification number, which is required to be engraved on the ID along with the organization’s telephone number. In my case, my engraving reads, in addition to my member number and MedicAlert’s telephone number, “New York DNR Order on file. Call for medical & drug information.” This tells emergency responders that with a telephone call they can get my medical history, a list of the medications I am taking along with dosage and frequency, the names of my physicians and contacts (e.g., next of kin) along with contact information, and any other documents I have stored with MedicAlert (in my case, copies of my Living Will, Healthcare Proxy, Medical Orders for Life-Sustaining Treatment [the New York MOLST form], and Do Not Resuscitate order). I do not need to be conscious or able to recall my medical history or know what drugs I am taking. I do not need to carry documents with me wherever I go. MedicAlert is accessible by emergency responders, doctors, and hospitals every minute of every day.

Responsibility for maintaining and updating my medical records lies with me, which means that I do not need to worry whether someone else has submitted information on my behalf. It is done online or via telephone.

I have made it a practice to give every doctor I see and every urgent care or hospital I visit for tests or routine care my MedicAlert member number and MedicAlert’s telephone number.

I started with my aunt and uncle and now we come full circle. They are of the generation that does not believe in sharing personal information (they do have neither a computer nor a smartphone), so they have been reluctant to make use of the various forms or to join MedicAlert. The consequence is that now, when these would be of most value, they are scrambling. They wonder, for example, whether there is something they have forgotten to tell the doctors; unfortunately, in the absence of the healthcare proxy form and because of the U.S. HIPAA (Health Insurance Portability and Accountability Act), their children cannot check the information given to the doctors and the hospital, and even if they could, may not know if the information is complete. How much simpler it would have been had the doctors and hospital been able to call an organization like MedicAlert and have all necessary information immediately sent to them.

My family will not have these problems; they will have access to my information and will know, when required to make a decision about my medical care, what my desires are — I will have already made the difficult and important decisions. Will your family be similarly situated?

Richard Adin, An American Editor