Start with Baby StepsPlanning an Event You Don’t Want to Attend
One of my wealthiest patients was cofounder of a bakery empire and a cooking-channel star. He was a smart man. At the age of ninety-two, as he lay in the ICU with an infection and in multi-organ failure, his son was left to unwind the intricacies of his life. Though he was close to his son, this man was so private that it took a court order and a police escort to gain access to his house, as well as months to locate his bank accounts, safe-deposit boxes, and will. All the while, he lingered in a terrible state while his son was filled with anguish, unsure about what to do. This man’s choices had a ripple effect on how his loving family and medical team were able to care for him.
How many times have I seen similar situations? As a physician who works with end-stage lung disease—more times than I care to count. Wealthy people are as guilty as those without much to pass on. Music icon Prince is a prime example. Prince died in 2016 of an opioid overdose without a will, placing his $200 million estate in the hands of Minnesota courts. A year after his passing, the estate was still tied up in court, and disputes among potential heirs had escalated. We’ll never know why Prince didn’t create a will. But most of us might admit that we can understand. I personally don’t know anyone who gets excited about planning for the time when they will die. I usually talk about it in terms of planning an event we don’t want to attend. But when we put it in perspective, planning for this inevitability makes the best of sense. It’s the kindest thing we can do. Yet most of us resist. We put it on the back burner. Even the thought of researching advance directives and estate planning and then filling out a flood of forms that we’ll likely have to update every year or so is off-putting. What’s the incentive, really, in preparing for a day most of us don’t look forward to, much less think about?
Allow me to ask a few thought-provoking (hopefully) questions: Who wants to be a burden in their old age? Wouldn’t you prefer that the house were clutter-free, inheritance plans laid out, debts paid, and all-important documents signed and dated? Wouldn’t you also want your family to know and honor your wishes? Maybe you’ve at least thought about what you want for a send-off, whether a traditional funeral, your ashes dispersed over the Himalayas, or the party of the century. Giving this some forethought is a pretty good deal, really. You get what you want, and your family is not left grappling with difficult medical decisions, tearing the house apart searching for documents, or spending what would have been their inheritance on lawyers and court fees. Intellectually, we know this is true. So why do more than half of Americans put off these preparations and conversations until it’s too late?
Some of it might have to do with awareness. According to a German study, a large percentage of people aren’t aware that health-care proxies are even a thing. The researchers surveyed a group of cancer patients and a group of healthy controls, as well as physicians and nursing staff, questioning them about advance directives. Surprisingly, only 10 percent of the medical staff had advance directives in place, compared to almost twice as many patients and healthy controls (18 and 19 percent, respectively). But a majority of participants had good intentions: 50 to 81 percent had it on their wish list of things to do. The cancer patients were at the high end of the range. Not counting the medical staff, only 36 percent of participants knew that they could appoint a health-care agent. Among all three groups, about half thought that family members could abuse such documents.1
So clearly, trust can be an issue when it comes to advance directives. And perhaps uncertainty—how do we know how we’ll feel about our plans when the time comes? Some patients tell me that they don’t understand the procedures well enough to make these types of decisions. And what about the gray areas? All of this can add up to failure to take action. But I believe there’s more to it than lack of knowledge or understanding. My patients tell me that talking about or planning for their death makes it “real” and that the thought of dying provokes anxiety.
Start with Baby Steps
If lack of understanding is keeping you from completing advance directives, start by getting the information you need. Many insurance providers will pay for advance directive sessions with a clinician if done during a wellness exam. Medicare started covering the cost in 2016.
I like to suggest that people schedule an appointment with their family doctor, review the documents, and ask questions such as these:
• What is involved with each of these procedures (intubation, resuscitation) and why would I choose not to do them?
• What happens if I have a chance at recovery? Where do doctors draw the line?
• How can I trust that the doctor treating me will follow my orders?
• How can I trust that my family will follow my orders?
• How do I ensure that the hospital knows about my directives? What if something happens to me while traveling out of the country, for instance? Or out of the state?
• Can my health-care agent go against my directives?
• My wife knows what I want. Can’t she just make the decision for me?
If you’re not ready to fill out the paperwork after the session, take it home with you and process what you learned. Talk to close family members about what they think. Consider who might make a good health-care agent. But mark a date on your calendar for when you will decide what to do and make sure to follow through; otherwise, the task becomes a moving target. I’ve been guilty of postponing the updates on my own will. You just have to make it a priority and get it done. 
Anxiety: The Only Reaction Available
For some people, preparing for the day they will die provokes a low level of anxiety. For others, it creates an exaggerated emotional response. In the field of psychology, this response is known as “death anxiety,” which some people experience as dread or fear whenever they think of dying.
Death anxiety is a fairly recent cultural phenomenon. Anxiety, for instance, is never mentioned in any of the historical descriptions of the dying process. Plenty of studies argue that before the 1800s, conversations about death and dying occurred more naturally and regularly than they do today. People used to talk about death and prepare themselves and their family. But tremendous advances in medicine have given people the perception that we are invincible. We do not go into old age or terminal illness having had this conversation about death and dying and forgiveness. When that conversation has not taken place, the only human reaction available to us is anxiety and frustration.
Where Do You Stand?
Anxiety over death and dying is the most common emotion I see in the ICU. I see this over and over again, so much so that I mentally categorize families into groups based on their emotional response to death. One group—a very small number of families—react to the news of an impending death with little or no anxiety. They hold a mature understanding that life is finite. They sit calmly with their loved one and are fully present with the death experience. They don’t like it, but they have accepted it, and so they don’t fight it. These people have come to terms with the fact that their loved one will soon pass. They understand life, and so they understand death.
I remember vividly my first on-call shift at the Cleveland Clinic. I tended to the family of a patient who was actively dying of multiple complications from cancer. He was fully conscious, with two daughters and his wife at his bedside. They seemed to me to truly comprehend life’s limitations. They were sad, but no one was screaming or yelling. They understood that he was about to die. To this day—many years afterward—this family remains an example to many in the ICU. And it started with the patient. Full of disease and shortness of breath, he never showed any signs of anxiety. Even when he had little strength left, he would muster a smile when I walked into the room and asked a question. That to me is the real treatment for any level of death anxiety—the real treatment does not come in a pill but stems from accepting that death is a part of life.
The second group, which is the majority of families, displays tremendous anxiety. They scream, holler, blame, and fight. I believe that what they are really fighting is not each other but the idea of death because they have not accepted death as being a part of life. I suspect that they have never made any effort to think about death much less talk about it. Surprisingly, I find that many medical professionals fall into this group.
At one point in my career, I was called in to intervene with a family that was being particularly difficult. The patient was an eighty-nine-year-old mom suffering from heart failure, advanced diabetes, terminal gastric cancer, and chronic pain. Her family consisted of three practicing physicians. One of them was also a professor at a respected university. These siblings were blessed with drive, intelligence, and a great deal of compassion for their mother. They were also plagued with anxiety. How do I know? As soon as they entered the ICU, these otherwise rational scientists became the most irrational people on the planet.
I’m not exaggerating when I say that every single day they were fighting with everybody within range—firing nurses, firing doctors, demanding their mother receive more attention. The dissonance led to one battle after another. They “fired” a nurse for not giving medications right on time and berated an intern for not knowing the exact value of a blood test. Housekeeping, which did an amazing job keeping the area spotless and sterile, walked on eggshells when they passed her room. They’d been reprimanded by this family multiple times. The siblings also bickered among themselves about which treatments were most appropriate, including whether to perform a tracheostomy and insert a feeding tube. The family’s outbursts were out of line and adversely affecting their mother’s care. No one wanted to enter the room when the clan was present. It felt like the Hatfields and McCoys together against the treatment team.
I was in charge of critical care at the time and was called in toward the end to see if I could somehow calm their fury. I must say I was somewhat intimidated. Others had tried and been cast aside. It can be hard to rationalize with rage of this magnitude—what words could possibly quell a raging sea?
The only thing that I asked was that we all be in a room together. I felt it was important to see their facial expressions, body language, and emotional reactions. And I wanted to address each of them individually. I consider nonverbal communication the highway to compassionate care. They quickly agreed. Although they lived in different cities, all three of them were staying in the area to keep watch over their mom’s condition. The four of us sat down at a table in a hospital conference room.
“How can I help you navigate these waters?” I started. I let them talk, and by the middle of the conversation, I realized that they were not talking with each other. I don’t know if they even heard each other. They were in overdrive, unable to stop their chatter, feeling that only their words counted. After ten minutes of this, I interrupted. “You know what, how can we do the very best for your mom, given the circumstances that she is in today? Without blaming anyone, how can we fix this? How can we fix it and get the best outcome?”
My words did nothing, and their accusations grew bigger and more pronounced. So I resorted to what I know best. “Let me stop you right there,” I insisted. “I’m going to tell you one truth. One day, your mom is going to be gone from this planet. I’m convinced—I’m 100 percent convinced—that there is not a single parent out there who doesn’t want their children to be united in these kinds of situations. I’m convinced. What do you guys think?”
The daughter broke out crying, “I’ve been having this feeling that we have been interfering with her care because we know medicine, and we have forgotten that we are humans, that she is human.”
My words were simple, but they resonated with the siblings. The focus went from the anxiety of having the medical knowledge but not the ability to save their dying mother to patient-centered care. To each of them, her death meant failure. So they, more than most, fell prey to the misguided belief that modern medicine always has an answer. Much to everyone’s relief, during the five weeks their mother remained in the hospital, the focus moved from them to her. This transition not only took the pressure off of these talented clinicians, but allowed the family to feel what anxiety so cleverly disguises: love, compassion, and presence of mind.
The third group of families falls somewhere in-between. A balance of acceptance and anxiety leaves them in control but visibly upset. They may lash out at staff, but their behavior isn’t outrageous. They settle down eventually, but not without displaying signs of anxiety, including blaming, distrusting, and even sulking.
Neither socioeconomic status nor education nor age plays a role in determining which group a family falls into. My belief is that the more we’ve allowed ourselves to talk about death and to treat it as a part of life, the more naturally we will respond to the inevitability of it. I have seen this in even the most traumatic of cases.
Matt was a charming college student who was about to finish all his premed class requirements when he was hit by a drunk driver. He was taken to the ICU where I was working. He suffered multiple injuries, including major head trauma and rib fractures. I met his father and mother soon after he was transferred from the operating room to the ICU. They were anxious, crying, and in total disbelief. Dr. Thompson, the neurosurgeon, came to meet them while we were talking. He explained in detail the severity of the brain damage and the procedure he had performed to help decrease the intracranial pressure. The more he talked, the more confused the parents became. All of a sudden, the mom interrupted, “Will he survive? Is he brain dead?”
“I don’t know, Ma’am. Time will tell,” Dr. Thompson replied.
During the next four days, I saw a parade of family, friends, college students, and neighbors coming and going. Matt remained unconscious. On day five, he was pronounced brain dead. I came back to work on day six and witnessed his mother, father, and siblings painfully saying good-bye to Matt. They hugged each other and cried and prayed around his bed. Later I passed by Matt’s room again and ran into his father. He was thanking the medical team for everything. I could sense the pain in his heart when he told me, “Unexpected, for sure. . . . I wish I could stop time, but I can’t. This is life.”
Preparation Relieves Anxiety
Dr. L. Nelson Bell, a medical missionary and the father-in-law of famous evangelist Billy Graham, once said, “Only those who are prepared to die are really prepared to live.”2 I’m going to take his statement literally.
Death is such a mystery. It has colonized our awareness, but the fear of death dominates how we respond. We don’t recognize that we are born to die and that it’s a reality that will happen whether we reject it or not. And so we are prone to put off anything that has to do with death and dying. It’s our way of resisting what we don’t want to face. History tells us that when we are prepared to die, our lives are actually better. Thinking about end-of-life choices can improve the quality of life now and toward the end. Even more important, it eases the burden on family. So expressing our wishes should be one of our most important priorities. “Only those who are prepared to die are really prepared to live.”
The experiences people go through after the death of a loved one can sometimes motivate them to get their own affairs in order. I saw this with one of my patient’s brothers. During his sister’s last day, he endured his nephews fighting over everything. Within weeks, he had prepared a trust with all of his wishes clearly stated. We might be encouraged to model the steps of someone we know. But if things didn’t go smoothly, we can also learn from another’s mistakes.
Start When You Move Out of Your Parents’ Home
Planning for our dying day is important at any age. In the same week in the ICU, I treated a nineteen-year-old man and a fifty-year-old woman. The woman, Caroline, had been married to her husband for five years before they had separated for about twenty-five years. But they had never officially divorced. For the past ten years, she had been living with and sharing her life with her boyfriend, Bob. One day, Caroline’s blood pressure suddenly spiked, and she suffered a stroke. She wound up in a hospital bed in a persistent vegetative state. Her prognosis was dim. Recovery from a massive intracranial bleed is very unlikely. Caroline’s legal husband, we learned through talking with Bob, had died five years earlier. Bob was crying and confused. The case manager reached out to the hospital’s legal department to find ways to help him, but their hands were tied because Caroline had never given Bob power of attorney. And then her children, who had not been a part of her life for a very long time, arrived from out of state. Meanwhile, Bob was dealing with the emotions of being unable to help Caroline. She needed to be moved to an LTAC facility, but the health insurance company was asking for a financial report, and no one had access to Caroline’s accounts. This story is happening in my ICU as I write this chapter. Imagine all of the complications still to come. We are right there taking care of Caroline and listening to Bob’s frustrations and concerns daily.
At the same time, I have a nineteen-year-old named Jake who went to a party and was found in the early hours of the next morning on the street. Someone had brutally assaulted him, resulting in him being brain dead but still functioning in the ICU. His girlfriend, Linda, showed up at the hospital. Linda said with complete confidence that he had expressed to her that he didn’t want to remain on a machine. His parents, however, did not know about his wishes. This has created a major division. At nineteen, Jake is an adult capable of making his own medical decisions, yet in the absence of a written document, determining who is the most suited to making that decision for him can be difficult. In this case, the ethics committee got involved, and his parents and girlfriend agreed to work together without involving the court system.
I strongly believe that when children leave their parents’ home or are living independently, they should have written end-of-life wishes and express them clearly. We live in an age with access to thousands of apps that help us find coffee shops and trivial facts, but no one seems to know where to turn to make these important plans. We all need this. It is imperative to society.
I’m hoping these stories (and perhaps stories you’ve heard from others) will give you the perspective you need to move beyond any anxiety you might have. But what if you need to broach this sensitive topic with a family member? I’d like to share some stories of how some people have successfully handled this.
Asking the Delicate Questions
After hearing me speak on the subject of advance directives, Stacy, one of my newer physician assistants, approached me. She told me that hearing my speeches and working in the ICU had opened her eyes to how important preparing for death is and that she had never thought about it before. Stacy is from a blended family with six siblings who are all incredibly close, yet the subject of death and dying has never come up. The family is strong financially and owns several properties. Stacy asked me how she could approach the subject with her parents. She felt that bringing it up out of the blue would seem odd. She didn’t want her parents to think she was asking for the wrong reasons.
My advice was to use the passing of someone close to the family to bring up the subject: “Mom, Helen had a very nice, traditional funeral. I think I would rather be cremated. What do you think you would want?” Or discuss advance directives with your doctor at your annual exam and mention it to Dad: “Yesterday, at my wellness exam, I filled out a health-care proxy and a living will. I made you my health-care agent. I feel really good about taking care of this. I think you should think about doing this too.” The small amount of time it takes to pass on subtle comments can be highly effective.
Here’s what Stacy did: She went around trying to convince her siblings of the need for this conversation with their parents, but they were resistant. Since she wasn’t able to persuade them, she took a backdoor approach. She and three of her sisters belong to the same book club. The next time it was her turn to pick the book, Stacy chose Being Mortal by Atul Gawande. They read the book together over the course of a month, and by the end of the month, the sisters were on board. The women developed a plan for how to approach their parents. The next time the family had dinner together, they would bring up the book they read at book club and then ask some very specific questions. At the family dinner table, conversation was usually pretty lively, so they felt their parents would chime in.
“Where would you want to die? In a hospital or at home?” Stacy started. Mom and Dad both responded that they didn’t want to die at the hospital. The next question was if you don’t want to die at the hospital, how will the medical team know? Stacy explained that if one of them fell terminally ill today, at this moment, the family would call 911, and they would be taken to die in the hospital, unless they had specified otherwise in an advance directive. The parents were not aware that they could take these steps.
The first few questions in the conversation were hard, very hard, for Stacy. But her parents quickly accepted the logic behind doing some planning and how it could curb anxiety for everyone involved. Stacy was pretty clever.
One of my aunts, who was very close to everyone in the family, was dying of pancreatic cancer here in Miami. She was separated geographically from her two children: her older son is a neurosurgeon in Spain, and her other son was living in Cuba. Her husband had passed two years earlier. Her sons contacted me with questions about treating the cancer. Advanced pancreatic cancer is difficult to treat, and the survival rate posttreatment is low. Her sons were afraid she would not understand that filling out advance directives was important now, so I agreed to talk to her.
I sat with her and I said, “Listen, I haven’t mentioned this before because we Cubans are really afraid of cancer, but one day I’m going to die—we all are going to die. But if I die today or you die today, it is important that we express our wishes to our family, so they understand what to do and what not to do. We are living in a time when they will call an ambulance, and they will take you to the hospital. In the absence of any document expressing your desires and your feelings, the medical team is going to do everything they can to keep you alive, but in the end, it will produce a lot of pain and still not help in the long run. Inevitably, we are all going to die.”
My aunt understood, and she completed the paperwork. We followed this up with a phone conversation with her sons. We recorded the conversation, and it was the most beautiful thing. She said she wanted to have a photograph made of the entire extended family. Her son flew in from Spain to be with her. Beautiful.
Bear in mind that a lot of older adults are unaware of the medical procedures that are available to us to support life. They also remember the days when you called the family doctor, who made a house call. Today you call 911, and an ambulance takes you to the hospital. This single change has tripped up more people than you might realize. This is why I strongly believe in informing older adults about what is going to happen in the long run. Most people want to die at home, but they end up in the hospital.
“I’m Not a Planner!”
Some people are planners and others aren’t. It’s true we can’t plan for everything. Life happens. But death is inevitable. We know it will happen; we just don’t know when. If we’re unconscious, we won’t have a say in what happens to us. So really we’re taking a gamble. But last-minute planning is an option for those who suddenly find themselves with a serious illness and with their faculties intact.
Just the day before yesterday, I was called in to see a patient, Jack. He had gone to the emergency room complaining of neck pain, and when they did a CT scan, they saw a mass on his neck. When they did a CT scan of his chest, it revealed a mass in his lungs. A two-pack-a-day smoker for more than forty years, Jack was now likely suffering from lung cancer and cervical metastasis—the cancer had spread from his lungs to his spine in his neck. This man had no other symptoms, just some neck pain, and suddenly he was facing this devastating reality.
Jack was a very well-known contractor. He was very good at what he did and was wealthy as a result. He didn’t get that way by being unorganized, but Jack could never have prepared for that moment of truth in the hospital. I came into his room to examine his lungs, and he asked me what I thought his prognosis was. I told him I didn’t know and that nobody really knows. I’ve seen a patient with advanced lung cancer survive more than ten years despite the odds. I then added that I do know one thing: whether this is the event or not, you need to prepare. Jack was a big guy, over six feet tall, and kind of tough looking, so I was surprised when he started to cry. He admitted he was scared—scared of dying, scared of having cancer, and scared because he hadn’t planned anything.
The next day, I came in, and he was calling his lawyer to prepare a trust. He had started going through the process. At that moment, I felt a tremendous success. Even if cancer takes his life, Jack will be able to get his affairs in order.
Today, most doctors’ offices have access to advance directives. Or you can Google “advance directives” and find a website that will not only give you guidance regarding advance directives but simple steps you can take to help put your finances in order. Unless you have a lot of assets, you don’t have to see a lawyer to create a legally binding document. If you have access to a lawyer, that’s great. But most people can start with a simple approach.
Last Will and Testament: Tips for “Keeping the Peace”
Most squabbles over family heirlooms and property happen because of lack of communication and false expectations—expectations people assume and keep to themselves. Often, expectations are based on what people feel they deserve. Grown children sometimes see a possession passed down as a display of love—love they deserve. Communicating your wishes can put an end to false expectations and help avoid conflict. When you throw in some of the values you’d like to pass on, family members are less likely to battle it out for possessions. If your family is a complex web of step-brothers and step-sisters, significant others, or siblings who don’t get along, it’s even more important to specify your wishes.
Some of us may have only a few things to wrap up—maybe sign a quitclaim deed (a legal document issued to transfer interest in real property) and ensure that our loved ones know we have a life insurance policy to cover the cost of a funeral. Maybe we want all the kids to know that Jessica gets the diamond wedding ring and Elliot gets the car. These details can be important. Even if this knowledge sits with the kids for twenty years, they know what to expect. If you have to sell the diamond ring and the car before you pass, so be it. Make that clear too.
Getting Comfortable with the Idea
If I had things my way, planning for our own death would be as commonplace and as easy to do as sharing what kind of birthday cake we want on our special day. But I would say that it will take time for us as a society to feel that way. Likely, the acceptance of death and dying will always be a big issue for all of us, but that doesn’t mean that we shouldn’t plan and make our wishes clear.
In my opinion, end-of-life education should be crafted into high school and college curricula. I believe in embracing every aspect of education to increase the conversation regarding this topic, and I hope we start seeing better outreach.
In The 7 Habits of Highly Effective People, Stephen Covey suggests a visualization exercise as a way to reflect on character. Basically, we are supposed to imagine our funeral and listen to what people have to say about us. I am hoping that people will talk about me as a loving father and husband and a compassionate caregiver. I will take it a step further and add what I do not want: I do not want people complaining that I left my affairs in disarray, creating mayhem and discord among my family.
I wasn’t at Prince’s funeral, but I imagine that, for some people, the shock of not having a will turned the conversation from all the good he’d managed to do in his life to “What was he thinking?” And so I ask: How do you want your family to remember you? What will your legacy be? If given the opportunity, would you choose a graceful exit?
In the mode of Stephen Covey, visualize your funeral—not so much to imagine what others might say about you, but to see what type of event it is that you’re choosing.
Caring for You
Embrace resistance. In The War of Art, author Steven Pressfield explains that resistance is a sign that we are not doing something we really should be doing. Resistance is the ego fighting the spirit’s will. His solution is to sit down and do what you’re resisting, whether it be writing, painting, or filling out forms.
Main Chapter Takeaways
• Planning for our death helps ensure our last wishes are met and minimizes stress among family members.
• Most of us put these plans on the back burner.
• Medicare and other insurances now cover end-of-life care planning discussions with a doctor during a wellness exam.
• Get answers to your questions about advance directives.
• Most of us harbor some level of death anxiety. Preparation relieves anxiety.
• It’s never too early to begin planning.
• Encourage others to do the same.