Health Care Surrogate. Medical-system navigator. Caregiver. Advocate. Decision maker. Cast about in your mind and ask yourself, “Who will be this person for me when I need them?"
Don’t assume your child will do it. It’s not a job that just anyone can do, or even will consent to doing. I was that person to my parents for almost twenty years. I have two older sisters, but my parents entrusted me with that job via a Power of Attorney and Health Care Advocate document, and my sisters were, ahem, generous in relinquishing all responsibilities to me. It didn’t seem to be more than a legal decree for several years; but then it became a part of my life from which I couldn’t be spared.
Here’s what was involved in my being a Health Care Surrogate: Through numerous hospitalizations, surgeries, rehabilitations, and care-facility navigations, I was the decision maker. I didn’t take the duties lightly. Everything was researched before decisions were made. That’s when I had the luxury of time—perhaps 24 to 48 hours. At other times, literal life and death situations meant on-the-fly decisions made with limited information. I had to ask questions and assimilate facts and probabilities that were given to me in shorthand because of the time constraints of the situation.
Unless you’ve had medical training, you’re flying by the seat of your pants, making decisions that are a culmination of facts that are foreign in context to what you know. Add to that hundreds of hours of vigilance spent in hospital rooms, all the while consulting with myriad medical personnel about everything from surgery to tracheotomies to ports to ventilators to wound care to rehabilitation. A caregiver might experience repeated incidents of watching painful life-saving measures being visited their parents. Never-wavering attention to details that build the bridge to the next course of action is required, as is coordination of a care team, from surgeons to specialists to therapists to nurses to aides. Being a health care surrogate means fighting back when doctors tell you, “She’s had a seizure that’s put her deep in the woods and she isn’t coming out.” Or, “The hip-repair surgery went well, but with his complications of Alzheimer’s, Parkinson’s and diabetes, he won’t live more than a year.” It means taking it personally and spending every ounce of energy and wringing your brain to mush from questioning, assimilating, sorting and finally, decision making. Plus, being the one who will live with the consequences of your decisions.
As a health care surrogate, there’s the doubt that comes from realizing you can’t possibly absorb even a fraction of the knowledge that medical professionals are steeped in; as a result, you grasp just how vulnerable you’ve made your parents by handing them over to a system that’s designed to usher them, since they are “sick and old,” out the proverbial door of life. The system gives up, but you can’t. But inevitably, the decision is taken out of your hands. Death comes knocking again and again, until the door is finally opened, and your only consolation is that you delayed the inevitable by keeping death impatiently waiting at the door.
Who in your life will do this for you?
It can’t be done effectively from a thousand miles away. It can’t be carried out via a two-minute phone conversations with busy doctors. Merely saying, “Do whatever you have to do to keep her alive and make sure she gets well,” isn’t enough. Not by a long shot. Which is why so many people without advocates who expect “the system” to act in their best interest, perish.
Consider the enormity of all a Health Care Surrogate must deal with, and ask yourself again, “Who will do this for me when I’m old and sick?”
I’m compelled to write this blog because this past weekend, seven years after I laid my father to rest, I was faced with a life-and death situation that fell to me during a 24-hour period when a dear 90-year-old friend was rushed to the emergency room after becoming deathly septic. Her colon had been punctured the day before during a colonoscopy. Her son had been there for the procedure, but flew home before symptoms set in. Her neighbor miraculously happened to walk through the door minutes after her collapse and called 911.
Because her children live far away, neither could be there in time to oversee all that came next. Her daughter called me to be the person to intervene. She and her brother are the best of children in regard to being involved in her care, but they were far away. A few years before, I volunteered to become the local person who would be there in an emergency. And when the emergency presented itself on Saturday, I was in my car within fifteen minutes, driving the not-so-local sixty miles to handle it.
And there I was, entrenched up to my eyeballs in a life and death decision on behalf of my 90-year old friend. Déjà vu crashed over me as I discussed with the surgeon, and my still-conscious friend, whether or not to have the surgery, given the Do Not Resuscitate (DNR) order on file. Every complication that could arise, every action that might need to be taken during surgery which would defy the DNR, every probability of danger and outcome, was discussed. We were pressed for time, but I took detailed notes which I quickly relayed in long emails, painstakingly typed out on my Android, to her two children, with no detail or nuance left out. I let them know their mother wanted the surgery. It was my responsibility to give them every known fact and probability of what that entailed.
When the surgeon stumbled over the stated directive of her DNA, with a back note of “I’m not sure you won’t die anyway,” I stepped in to look my friend in the eye and clearly articulate her choices, which came down to: Surgery or comfort measures? I love this woman, which made it difficult, but I’d long ago learned that there’s no place for drama at such a time. Compassion, yes. Love, yes. But surgery was imminent if there was going to be a chance of saving her life. She stated clearly that she wanted the surgery. I could see the relief on the doctor’s face that somebody, anybody, was there to intercede. I wasn’t legally authorized or obliged to do so; I threw out the term “advocate,” and remarkably, not one single person in the hospital questioned my authority to be there. I dare say, if I had not been there, they would have leaned on the DNA, and she wouldn’t be here today.
My emails to her children conveyed the urgency and severity. Her daughter called me to say, “Stop! This is a life-saving measure and she doesn’t want that!” I held my phone to her mother’s ear so she could remind her of the DNR. Her mother said, “I can’t live with this pain. I want the surgery.” The daughter acted absolutely appropriately, and I’m glad she got the assurance she needed. Had she not been available, we would have gone ahead with the surgery based upon my intervention in ascertaining that my friend wanted it. And now that it was confirmed, it was up to me to see her through it. The daughter, meanwhile, would be taking a flight from London. The son, who had been there the week before, had a court case on Monday and couldn’t come. It was up to me to be there to handle every critical aspect of what was to come over the next eighteen hours, until her daughter arrived.
I’m so relieved to say all went as well as it could, in every respect. The surgery took almost three hours. By the time I finished discussing her post-op care with the nurse and anesthesiologist/pain manager, it was midnight. I went to my friend’s apartment for the night and returned to the ICU at eight o’clock the next morning.
Finally, in the afternoon when she was sleeping and I knew her daughter would soon arrive, I left to drive the sixty miles home. My husband, who had lovingly supported me through twenty years of time-and-energy-devouring care for my parents, was as supportive as always. But he saw the toll that 24 hours had taken on me, mentally and physically. Since my father’s passing seven years ago, I have powered down. This was like running a marathon flat out after not having even put on my running shoes for seven years. At sixty-three, I’m no longer in shape for such marathons. More such situations will occur with my friend, and I’m deciding I can’t commit to ushering her through them. It’s a damn hard job, and I’m just not willing to take it on.
So who will? In my experience, there are three things that drive a health care surrogate: guilt (wrapped in obligation), love or compensation. I don’t have enough of the first two, and I could never accept the other.
Now, knowing the profundity of the job of Health Care Surrogate, ask yourself who in your life will take it? Who will succumb to guilt or love in advocating for your care? Let me state as fact that just because you raised a child, that child may not be willing to care for you. I’ve seen it way too often.
If you think you will just compensate someone, it will be expensive. I once paid an RN who was smart enough to incorporate, ninety-dollars an hour to coordinate my father’s care after he broke his hip while I arranged my life so that I could fly down and take over. The bill was over two thousand dollars for those three days. Can you afford that?
And if you’re counting on medical system personnel to make decisions that are in your best interest, get real. What’s easiest, most convenient and most cost-effective will always win out.
Whom will you trust with your life when it hangs in the balance? Whoever you decide that person or persons are, discuss it with them in detail. Have a Health Care Surrogate Designation and Living Will in place. Tape a DNR to your refrigerator if you don’t want invasive and drastic life-saving measures to be taken when the EMTs arrive. Verbalize and document your preferences beforehand. Be specific in directives.
If you don’t have children, as I don’t, buy long-term care insurance. If you do have children, buy it anyway to save them from the financial burdens that can ensue. Decade-long assisted living and nursing home care for my father, who with his retirement benefits and Social Security didn’t qualify for Medicaid by a mere two hundred dollars, added up to over a half-million dollars.
Maybe you’ve been putting off this decision. You may be relatively young, and the necessity may seem years away. But a serious accident at forty can make you as vulnerable as a heart patient at eighty.
If you are childless or don’t have a good relationship with your children, you’ll need to press the issue of who, if anyone, is willing to take on this huge responsibility. Don’t wait to put a plan into action. I can guarantee, your life will one day depend on it.