Avoiding the Ambiguities of Advance Directives

Dr. Lauren Van Scoy, Author of "Last Wish-Stories to Inspire A Peaceful Passing"

Dr. Lauren Van Scoy has a website, www.knowyourwishes.com, for those who wish to reach out for help with end-of-life situations.

“I just don’t want to be kept alive on machines,” Janet S. told me when I asked what had propelled her to complete an advance directive. She went on to talk about her fear of burdening her son in the event that she developed an illness so severe that she had little chance of pulling through. It was a concern I had heard often before. Relieving a loved one’s burden is very typically the motivating factor my patients consider when they decide to complete their advance directives or living wills. 

Although advance directives are an important first step towards end-of-life planning, if created without candid discussions about values, fears, and the meaning of life quality, they may fall short of providing the guidance and protection that they were intended for. Most standard advance directives contain nebulous phrases that may sound good on paper, but when played out in real life, they sometimes create more confusion and burden than they alleviate. 

It’s complicated, and unfortunately, even physicians may misunderstand or misinterpret advance directives when they are considered in isolation of the person’s values, context of illness, and care goals. Through my work and writing, I’ve found that a useful way to sift through the complexities and engage patients and doctors in considering the relevant issues is through the simple art of storytelling.

Take, for example, the story of Janet S.

Janet’s story begins when she was diagnosed with lung cancer at age 59. The oncologists were hopeful that a regimen of chemotherapy would control the tumor and extend her life. She did well with her treatments for many months until she developed very high fevers and symptoms that were consistent with an infection, possibly in her bloodstream.

In the emergency room, her blood work was very abnormal and she was admitted to the intensive care unit where I would come to meet her and Richard, her son. Within a few hours of admission to the intensive care unit, Janet’s blood pressure plummeted and she was just a hair away from requiring life support. I pulled Richard aside and asked him about his mom’s end-of-life wishes.

Richard showed me his mother’s advance directive, which indicated that she did not want to be placed on mechanical ventilation. Richard was distraught. Only yesterday his mother was active and playful with his youngest daughter, today I was telling him that she needed life support. As he held the signed document we reviewed it. Mrs. B had selected a statement in the checklist that said, “I do not want to be placed on a ventilator.” I asked Richard what he wanted me to do. Without the ventilator, his mother might die.

I could tell that Richard was overcome with confusion. Why was I, the doctor reading his mother’s advance directive not certain of what to do? Why was I asking him to make a decision, the very predicament his mother had wished to avoid?

Uncertainty stems from certain wording in most standard advance directives such as: “I direct that my attending physician withhold or withdraw life-sustaining treatment that serves only to prolong the process of my dying, if I should be in a terminal condition or in a state of permanent unconsciousness.” This clause is often overlooked and the importance of it is frequently underestimated. 

In Janet’s case, she had a terminal condition: lung cancer. Yet the reason that she required life support was an infection, one that might be easily controlled with antibiotics. Being that she had cancer and had received chemotherapy, this simple infection was wreaking havoc on Janet’s body, but not necessarily irreversibly so that she would be permanently unconscious. And here lies the conundrum. What did Janet mean when she said she did not want to be on life support?  Did she mean under no circumstances would she want to be on a machine to keep her alive, even if there was potential that she might get off it again? Or, in this situation, in this context, would life support be acceptable to Janet for a short time if it meant that she might recover? How long would be “too long” for her to be kept on life support? I asked Richard and he stared at me blankly. He wasn’t sure.

We put Janet on the ventilator that evening and she recovered within three days. Once we got her off the machine she was grateful and returned to her previous state of health. She continued her chemotherapy and weekly visits with her grandchildren. The lesson her story teaches is one that we all must consider when creating our advance directives. These documents are often nebulous and written out of context so that, as in Janet’s case, they may not always apply.

Janet and Richard’s story is certainly not unique but there are some easy steps every person should take to avoid the unpreparedness, unnecessary burden, and unwanted aggressive interventions that come with such a situation.  

Following these 5 steps can help you prepare well for the inevitable mortality we will all some day face.

  1. Explore the stories of others. Learning from the experiences and choices of others may be the most valuable thing you can do to prepare yourself for a potential medical emergency. It will likely help you to feel less unsure of your own decisions and more likely to embrace and understand the necessary dialogues that are required for good advance planning.
  2. Consider your personal philosophy. Think about what quality of life means to you. Under what conditions would you consider your quality of life to be lost? What is a meaningful recovery and what insults to your independence would you find to be unacceptable? How long would you consider “too long” to be on life support? Use the Last Wish Compass, available in “Last Wish- Stories to Inspire a Peaceful Passing” to help guide you in navigating these important considerations.
  3. Name a “Go-To” person. Even if you have an advance directive, your medical team will approach your family for medical decisions in the event you become incapacitated. Sometimes called a healthcare power of attorney, proxy, or surrogate decision maker, it is important to be very specific and name the individual you want making your decisions if you become unable to do so yourself.
  4. Complete a legal advance directive. Written advance directives may help your ‘Go-To’ person with tough decisions they could encounter. When completing your advance directive, however, it is very important to review the document carefully to make sure you understand the conditions in which it will take effect.
  5. Talk to your “Go-To” person about your philosophy and advance directives. Advanced healthcare planning cannot occur in isolation. Even with an advance directive, if your decision maker is unaware of your wishes and your overall philosophy, it will be very difficult for them to make unexpected decisions on your behalf. Preparing your “Go-To” person effectively will help them through the process of speaking on your behalf and hopefully provide them with some comfort from knowing your wishes.

//About the Author

Dr. Van Scoy currently serves as Chief Pulmonary and Critical Care Fellow at Drexel University College of Medicine where she also completed her medical school, residency and Chief Residency years. She wrote Last Wish and developed KnowYourWishes.com as a platform to help future patients and their families prepare for inevitable end-of-life decisions and challenges. Dr. Van Scoy grew up in Doylestown, Pennsylvania and attended college at Emory University in Atlanta, Georgia. She and her husband live in Center City, Philadelphia.

For more information about end-of-life care and planning, visit www.knowyourwishes.com
The ideas and remarks in this article represent those of the author and are independent of those of her employer.   All patient details and identities have been altered to protect the privacy rights of the individuals.

An excerpt from Dr. Lauren Van Scoy's Last Wish: Stories to Inspire a Peaceful Passing, available now for purchase.

A little over a year later, I was back on rotation in the CCU, this time as a senior resident in charge of an intern. I printed out my patient list, and right at the top was Bruce’s name. Apparently, he was alive. I couldn’t believe it. Had he been here this whole time? I could only imagine the state he must be in after all this time. I had heard about the code, but not much else. His chart must be on its hundredth volume, I thought. Starting a new rotation with all new patients can be daunting, especially when one of those patients has had a long, complicated course like Bruce. It’s easier, sometimes, just to head into the room and start there, see what you’ve got, rather than paging through the unending pages of a very long chart. So I didn’t bother to look in the chart; I needed to see this with my own eyes first.

I stopped outside his room at the isolation cart and gowned up with the familiar yellow garb. The Infection, I remembered. I stepped into the room and almost fell over.

“Hiya, doc!” Bruce said. He was sitting in a chair next to the window, eating breakfast and watching his television.

“Uh, hi,” I said cautiously. “Are you Mr. Sellers?”

“The one and only,” he responded.

I squinted my eyes to see more closely. It was him. Instead of a horizontal patient, here was a man sitting upright in a chair. He was strikingly tall and muscular, wearing a Harley Davidson t-shirt, which was quite a contrast to my five foot nothing, petite self. He had the typical biker look to him, with brown eyes that were gentle yet fierce. Replacing the ventilator tube that had been in his mouth was a smile that went from ear to ear. If you saw him on the street, you might think he was surly, but up close, he was a gentle giant. I couldn’t believe that this was the man beneath the machines.

“You probably don’t remember me, but I’m Dr. Van Scoy. I took care of you a year ago when you were, uh . . .” I hesitated, not knowing quite how to say the words.

“Out of it?” Bruce finished for me.

“Yeah. Out of it.” I was kicking myself for not having read the chart before I’d walked in the room. I had no idea what was going on, and I had no idea where to take the conversation next. I wasn’t ready to do an evaluation on this person named Bruce; I had expected to see a comatose patient, the Bruce I remembered. So I bailed out the way most residents do when they get into a situation where they don’t quite know what to say: I plucked my pager off my hip and said, “Hang on, this thing is vibrating. I gotta go answer this. I’ll be back.”

“I’ll be here!” Bruce spooned some eggs into his mouth.

I made a beeline for his chart. I flipped it open and paged to the most recent progress note. “Healed sternal wound post transplant.” No fever. No white count. No bacteria. No vac. The infection had actually cleared.

My first reaction was shock and then an overwhelming guilt ceased me. I had written him off as dead. I thought back to my feelings of how cruel it seemed that we were keeping Bruce alive in such a state of obvious suffering. I’d thought that he had no chance for recovery. That he was a goner and we were wasting precious medical resources on a patient who had no chance for survival. I’d wanted to forego CPR and not resuscitate this man’s crippled heart. I’d thought for sure our medical interventions would be all for naught. But now, he was eating breakfast.

Suddenly, everything I thought I understood about critical care was wrong and flipped upside down. I’d felt disgusted by how aggressive we’d been with Bruce’s care way back when. Hadn’t Jason and I talked about the fact that this patient was clearly not going to recover, that he clearly should be a DNR (“Do Not Resuscitate”)? And then, he had coded! And they had saved him. Why, I wondered back then? For what? And now, it was very clear to me what we had saved him for: so that he could survive.

The revelation was terrifying, and being fresh out of medical school with little experience in matters of life and death, I immediately jumped to all the wrong conclusions. I assumed I was a horrible doctor. I worried that I’d never be able to face families looking to me for guidance about their loved one’s end-of-life care in light of life’s uncertainties.

I brought my woes and worries to my mentor, Dr. Poe, an intensive care physician I had bonded with early on in my medical training.

“You’re not a terrible physician,” he reassured me, “and you certainly weren’t wrong in thinking that Bruce may have been better off with less invasive measures and comfort care.” He paused, and my puzzled look prompted him to continue.

He explained that a do-not-resuscitate order would have been a perfectly reasonable decision for his family to make, or for a physician to advise, given his overall condition. Shifting the focus of his care to comfort measures would have been reasonable, too. Our job as physicians isn’t to predict the future, but to guide our patients’ families so they know what to expect with whatever route they choose to pursue, whether that be aggressive care or less so. Some people would never want to experience the things Bruce experienced, even if it meant living longer.

“Recovery doesn’t happen overnight,” Dr. Poe observed, “and I bet that in the time since you saw this patient last, he’s been through hell and back. You have to wonder what the cost was for him, physically and emotionally. What has he gone through since then and what kind of quality of life does he have today?”

“He’s alive, isn’t he?” Angry at myself, I sounded accusatory. “What if we hadn’t tried resuscitating him back then?” My confusion was making me defensive, and my guilt made me want Dr. Poe to scold me harshly, telling me that my clinical judgement was way off base.

“There’s no right or wrong in these matters, L. J.,” he said softly. “There is only choice.”

Three days later, I strolled into Bruce’s room. It had taken me several days to figure out exactly what had happened to him during the last year. I’d read his chart from cover to cover, shaking my head in disbelief. After his code, he’d been stabilized and switched onto the pneumatic driver, the hand-pump of LVADs. He’d been plugged into that wall for many months, only able to walk around the side of his bed, let alone get outside and enjoy a breath of fresh air. Yet his heart continued to beat, and with each beat, he grew a tiny bit stronger.

One spectacular night, the call had come in. A heart was available. The surgeon popped his head into Bruce’s hospital room and said the magic words: “Guess what?!”

Bruce recalled for me later the moment when he realized that he was getting a heart, and he insisted on doing one thing and one thing only: he would walk down to the operating room. The nurses tried to coax him onto the gurney, or at least into a wheelchair, but Bruce the Rebel knew that he could walk, so he walked his way right down into the OR with his surgeon by his side, awaiting the chance to open his chest for a third time in order to place the healthy heart. But after the third open-heart surgery, Bruce’s sternum was angry, and Bruce’s body could not fight off the infection. His sternal wound took over eight months to heal, and the infection ate away at his chest wall. He endured eight months of dressing changes and antibiotics, of sedatives and pain medications, and against all odds, he beat The Infection again and finally began the long and tedious road to rehabilitation.

“G’mornin!” I said. I was in a surprisingly good mood after reading Bruce’s amazing chart.

A single large tear dripped from Bruce’s eyes, salting my good mood. Had he been a little old lady having a cry, I would have sat on the edge of her bed and taken her hand, or perhaps placed my own hand on her shoulder to inquire what was wrong. Instead, I stood frozen and silent, caught off guard.

I quickly gathered my composure. “What’s wrong?”

Bruce pulled himself together in a way that only a man can do and answered, “I just found out information about my donor.”

I kept quiet, waiting for him to continue on his own.

The Gift of Life, the organ donation agency, doesn’t share personal information between donors and recipients unless both families agree, and even then, they divulge information very slowly. They have to be sensitive to both sides because after all, for every recipient saved, a donor must die.

“He was a biker,” sniffed Bruce. “He died in a motorcycle accident.”

I didn’t know what to say. I had heard about the so-called “biker brotherhood,” but to see Bruce sobbing like this, I didn’t know how to comfort him, so I reverted to my textbook training:

“Wow.” I said. “How do you feel about that?” An open-ended question is supposed to elicit the patient’s emotions. I didn’t know if the technique would work on Bruce the Biker. But it did.

“I don’t know, doc,” he said. “I don’t know. After everything I’ve been through, I don’t even know how to thank him. All I do know is that as soon as I get out of here, I’m going to get on my bike, I’m gonna rev it hard, and I know I’m going to feel my heart smile.”

Comments

In order to leave comment you need to validate your email address. Please follow the instructions in your email inbox. You can also