9. Knowing the Difference Isn’t Easy
You and I make wiser decisions after our hearts spend time in the house of mourning. I tend to make good decisions at funerals and poor ones in restaurants. I have made wise financial decisions while surrounded by starving children, and poor decisions from the suburbs. We need to keep our hearts close to the house of mourning to avoid decisions we will regret.
FRANCIS CHAN
Ben Coombs, an estate planner and a friend from my church, pulled up a chair next to my desk, opened his briefcase, and spread before me a four-page form titled “Advance Health Care Directive.” It explained how to appoint someone to make health care decisions in the event that I became unable to decide for myself. My eyes slowly scanned each intimidating page. As I zeroed in on one part of the form, the part that looked a little like a living will, the language seemed especially off-putting.
Under point number four—Statement of Desires—it read, “I want my life to be prolonged, and I want life-sustaining treatment to be provided unless I am in a coma that my doctors reasonably believe to be irreversible. Once my doctors have reasonably concluded that I am in an irreversible coma, I do not want life-sustaining treatment to be provided or continued.”
I nervously bit my lip and read the paragraph again. The column next to it went even further. It talked about withholding or withdrawing life-sustaining procedures altogether.
But then I glanced at the third column, which presented a dramatic alternative: “I want my life to be prolonged to the greatest extent possible without any regard to my condition, the chances I have for recovery, or the costs of the procedures.”
I squirmed a little in my wheelchair. “Why do I have to make a choice and sign this section?” I asked. “Can’t my husband just privately tell the doctors my views on prolonged treatment?” Ben pointed out that the person whom I would legally select to make health care decisions for me—if I were unable to make those decisions for myself—needed to faithfully represent my known wishes.
I looked at the place where I would date, sign, and have the form notarized. “What if I change my mind?”
“You should update this every seven years, Joni. Unfortunately,” Ben said as he shrugged his shoulders and flipped over the document, “not many people even know about designating a health care proxy. What few do know it—well, they keep putting it off. Then there are those who never take the time to keep the document up-to-date.” He shook his head and paused for a moment. “A lot of headache and heartache could be avoided if people only took time to prepare for the future.”
I knew exactly what he meant. I needed to prayerfully and carefully think through health care decisions, especially if, in the future, I became mentally unable to think. The physical setbacks I have suffered forced me to think about the way I wanted to approach my own process of dying. Not everyone has that reminder, though.
Questions to Consider
Before I signed my “Joni Tada” on any dotted line, there were serious questions I had to ask. The first was straight out of Psalm 39: “Show me, LORD, my life’s end and the number of my days.”
On the one hand, Lord, You say that length of days is a blessing, but on the other hand, there has to be a time to die. This is no decision I can make in a vacuum. It has to involve the Lord and Giver of my life. I need to know what You think about the choices facing me.
It helped that I already had an otherworldly perspective on the process of death. The apostle Paul, who was near death himself, was able to confidently say, “We . . . would prefer to be away from the body and at home with the Lord. So we make it our goal to please him, whether we are at home in the body or away from it.” I wanted my decision about the way I would die to meet with His approval, from the time I held a pen in my mouth to scratch “Joni” on the signature line to the last breath I would take on this side of eternity.
My decision also involved more than God and me. There were others to consider. For my family’s sake, it was important to leave an advance directive about the sort of death I wanted to face. Not to sign the document about a health care proxy could place my husband, Ken, in an awkward position, especially if I were to become unconscious or mentally incompetent. If a hospital or the state took issue with Ken’s directives about my care, then under the judicial doctrine of “substituted judgment,” the court would assume the responsibility of determining my desires regarding medical treatment. Without having documented evidence of my wants and wishes, Ken might end up in a fight with the courts in the midst of grieving my last days.
I also needed to assess my relationship with Ken, my family, my friends, and my associates. How would my choices in dying affect them? Would any of my decisions cause intolerable guilt or stress for my husband? And I needed to cement my relationship with my medical care team. Did we both appreciate the limitations of my disability? Did I understand all the facts about life-support systems and their help or hindrance to me?
Having thought through these questions and more, I decided to sign the advance care directive—for my family’s sake, for my protection, and for God’s commendation.
I took the document home for Ken to study. He knew I had wanted to designate him, as well as an alternate proxy, as my health care agents, but we had been putting off the discussion for some time. After dinner, Ken opened the folder on the kitchen table and slowly read each section. He was quiet, and I wondered what he was thinking.
Much later in the evening, he came into the bedroom and sat on the edge of our bed. “This is a good thing to do,” he said with a sigh. “A little difficult to talk about, but a good thing.” He looked straight at me and said, “Well, what have you decided?”
“I know my body better than anybody,” I said, “and I know that all these decades of paralysis have taken their toll. Let’s say when I’m a little older, I face heart failure or need to have a kidney removed or maybe go on dialysis. Quadriplegia has already caused poor circulation and has put my kidneys in jeopardy, so I just don’t think it would be worth the risk. I’d probably opt not to have major surgery. Do you see what I mean?”
Ken nodded.
“Plus, I was reading in the Bible the other day about receiving a new body when I get to heaven. That alone makes me not afraid of death,” I said. “Like it says, ‘And we eagerly await a Savior . . . the Lord Jesus Christ, who . . . will transform our lowly bodies so that they will be like his glorious body.’”
“You sound like a walking theology textbook,” he said.
“I’ve been paralyzed for a long time,” I said with a smile. “I’m excited about getting a body that works. Anyway, like I mentioned, I’m not afraid of death, but with things so high-tech and with hospitals so . . . so mechanistic, I’m a little afraid of the way I could die.”
“And this is why you want us to sign this,” Ken said as he tapped the document in his hand. I nodded, and we both sat there for a long moment. For the rest of the evening, we discussed our wants and wishes of “in sickness and in health . . . till death do us part.”
Since that talk took place many years ago, Ken and I have followed our friend Ben’s advice and revisited this topic as the years have passed—especially following my diagnosis of stage 3 cancer. For one thing, before I could be admitted, our community hospital required us to hand over my advance care directive for their files. Hospitals today are more proactive about such things; they obviously do not want to find themselves in a legal battle should medical decisions be made that are not in accord with the patient’s wishes.
And as I shared in chapter 5, in the years leading up to my diagnosis of breast cancer, my struggle with pain stole so much joy and hope. I found myself wondering if some illness might come my way that would put an end to my chronic pain. However, in the face of my diagnosis, I changed my mind about not opting for any major surgery. And once I underwent my mastectomy and began to heal, I discovered a renewed joy for living. I wanted to live. I was willing to undergo chemotherapy and radiation if my doctors thought it best. I think this was partly due to my deepening relationships with friends, my sisters, and my husband, Ken. Relationships became so much more precious.
Also, simple pleasures became treasures, such as watching hummingbirds flit through the air or sitting with Ken by the sliding glass door and watching a rainstorm. Life meant so much more—much more than the inconvenience of pain. The point? We never know how highly we value life—how much we’re willing to fight for it—until we feel it to be fleeting. So don’t be too quick to finalize your preferences, and don’t be afraid to return to your directive to reconsider if you’ve changed your mind.
A Living Will versus an Advance Care Directive
But back to the technical side of this question. Why would I choose an advance care directive with this provision for a health care proxy? Why not simply sign a living will? At first glance, the living will sounds good. You’re able to write down on paper exactly how “extraordinary” you want extraordinary medical treatment to be. But living wills have problems.
First, a living will can send a signal that you don’t want to have anything done. For instance, in a crowded emergency room, the overworked doctors on duty could interpret a living will to mean that you do not want to be resuscitated, period. Your stretcher is shoved against a wall while other emergencies waiting in line are ushered in.
Second, a living will can’t be erased at the last minute. You have no idea when you write it what sort of death you will face or what sort of new treatments may have become available. There’s simply no way to accurately foresee the details. And who knows, you may, like most people, want to change your mind when faced with the reality of your own death.
People tend to think a living will gives them control over the way they will die. But in fact, when you sign a living will, you give up rights and control to any doctor who happens to be on the scene to decipher it. There’s no guarantee your favorite friendly physician will be the one interpreting the vague wording of a living will.
“But,” I hear you saying, “can’t my family member explain to the doctor what I meant?”
True, family members can take a stab at deciphering what you meant and explaining it to the physicians on the scene, but the doctor doesn’t have to heed the advice. The law gives complete power and protection to the physician who has the document in his or her hands. If it’s your own doctor, there may not be a problem, but the way medical facilities are set up makes it unlikely that your physician will be on hand when you sustain a serious injury or illness.
So which is it? Living wills or an advance care directive with a designated proxy? It boils down to this: Do you want to be represented by a piece of paper or a person?
I want a person to speak for me. A person, unlike a living will, is flexible and can be responsive to the circumstances. A person can hire or fire a doctor or even discharge a patient from a hospital. But that individual had better know my exact wishes inside and out—my life will be in his or her hands! Of course, that brings me back to Ken and the advance care directive. I trust Ken. We share the same beliefs, and he knows me better than anybody. I want him to speak for me.
To be honest, neither living wills nor designated health proxies are perfect answers to the dilemma of dying, but of the two, the designated health proxy holds sway. Yet even appointing a person to make medical treatment decisions has its built-in problems. Laws vary all over the nation. One state excludes food and fluids from the category of life-sustaining procedures, and other states allow people to decide specifically whether or not they want food and water withheld.
What’s the best thing to do? Ask questions. Whether in a family conference with the ethics committee at the hospital, in a consultation with an estate attorney, or in a discussion with nurses and social workers, it’s always good to ask.
The “Miranda” Law: You Have the Right to . . .
Actually, the Patient Self-Determination Act now requires hospitals or nursing homes that receive Medicare or Medicaid funds to explain which documents are recognized in your state, whether living wills or advance care directives. Your rights as a patient are recited to you when you check into a hospital, a kind of detailed briefing like the Miranda warning that law officers give.
So whether you’re going in for major heart surgery or just overnight observation, you will be handed a frank written reminder of your right to refuse medical care should your condition become hopeless.
The law was originally drafted in response to the emotional and heartbreaking court proceedings over whether or not to withdraw life support, including food and water, from Nancy Cruzan, a young woman left in a comatose state after a terrible accident. The hope is that this Miranda-like law will make it far more likely that such problems will be resolved at the patient’s bedside rather than in some distant courtroom. Before her accident, Nancy had never written down her wishes about the way she would want to die. Her parents were left to argue with the hospital, in and out of the court system, about the appropriate course of action. That’s why there was so much controversy when her feeding tube was removed, not to mention the outrage that a young disabled woman was then starved to death.
In one sense, the Patient Self-Determination Act is helpful, because people need to know the facts. Yet in another sense, it’s alarming, even frightening. Just having a nurse confront you about your advance care directives and then hand you a sheet spelling out your rights as you check into a hospital for even a minor procedure can be disconcerting. A question like that may affect your judgment about medical treatment, especially if you’re depressed about being hospitalized. You wouldn’t have any chance to think, pray, or plan wisely!
However, the Patient Self-Determination Act, for all of its flaws, is an attempt to get people thinking about health care proxies and living wills before illness strikes and rational thinking goes out the window.
So don’t wait until you’ve arrived at an ER or checked into a hospital. Prayer is the key to preparing yourself and your family for your decision. Ask God to give you the necessary wisdom to make these important choices. Meet with your pastor. Talk with your spouse or parent. Find out from your doctor what directives are legal in your state, or ask your local hospital or senior citizens center to send you information. If you wish, you can visit the website of the National Right to Life and download their document “Will to Live” specific to your state. Then don’t put off filling it out!
When You Sign on the Dotted Line
Okay. So I put my signature to a document. What about you?
Remember, an advance care directive is not only a legal directive but also a moral directive. I’d advise you to review a couple of key moral issues before predetermining medical treatment.
If you were my personal friend and I knew you were about to hammer in concrete “No life supports in case of emergency,” I would say, “Wait! What if you only need those life supports for a few days? What if then you’d be fine? Don’t risk throwing your life away!” One more thing. If you exercised your right to predetermine “no life supports, including feeding tubes,” you may end up asking that you be starved to death, a decision for which you would be held morally responsible before God.
A Good Death
If anyone ever died “right,” it was Kelly, my five-year-old niece. The youngest of three children, she was the typical tomboy on the family farm. Her mother, Linda, a hardworking single parent, had given her children a lot of responsibilities around the house and barn, and Kelly had become a strong, resourceful, and independent little girl.
One day Granddad noticed that Kelly was limping up the dirt road, slightly dragging her foot. My sister Linda took her to the hospital, and in the course of testing, doctors discovered an enormous cancerous brain tumor. We were shocked and stunned. Surgery could only do so much, and within a month, Kelly could only get around with the help of a wheelchair. After Kelly endured a long hospital stay, the doctors suggested we take her home to die.
Now there were two sets of wheels around the dinner table, my adult-sized wheelchair and Kelly’s miniature one. The entire family rallied to focus love and attention on Kelly as she grew weaker. Everyone tried to make her as comfortable as possible. As a result, it was amazing to see the change in this little girl—not so much the physical change, but the change in her spirit and attitude. No longer the stiff-lipped “I don’t need help; I can do it myself” tomboy, she softened into the sweetest, happiest child we’ve ever known. She virtually memorized “Goldilocks and the Three Bears,” wore out her cousin Kay with lots of tea parties, and, most of all, let her imagination run wild when it came to talking about heaven.
Kelly tired easily during those last few months and spent more and more time in bed. She seemed to have no fear of the dark, her disability, or death. One night, I remember passing her dark bedroom and hearing her sing in a half-whisper, “Jesus loves me, this I know . . .”
Kelly taught us a lot about dying right. She talked glowingly of when she would eat ice cream cones with Jesus. She would ride bigger ponies, pour all the ketchup she wanted on her hamburgers, and maybe even talk to bears like Goldilocks. At one point when we were alone in her room, I looked at her in all seriousness and asked, “Kelly, when you see Jesus, will you please tell Him that I said hi? You won’t forget?”
She smiled and nodded.
Earlier in the evening on the night Kelly died, she said to her mother, “Mommy, I want to go home.”
“But you are home, honey,” my sister tenderly told her.
“No, I want to go home with Jesus,” she whispered hoarsely. Within several hours, she was there. Kelly passed away in her bed, surrounded by her family, stuffed animals, and a suitcase packed with her jeans, dresses, and toys. Kelly died right, and that fact alone did more to ease the heartache and pain of her passing than anything else.
Hospice Care
Three simple things our family did made Kelly’s death good. First, her pain was kept under control, and she was made as comfortable as possible. Second, Kelly’s illness brought the family together. Kelly gave sisters, cousins, uncles, and grandparents a reason to unite with, support, and care for one another. Third, Kelly remained a part of the community. Neighborhood children played games at her bedside, Granddad endlessly read picture books to her, and harmony rang out as she weakly joined in family sing-alongs. She was in almost constant contact with loving people who continually convinced her she was not alone or deserted in her time of need.
What happened in Kelly’s case is very much what happens in a hospice setting. We practiced most of the principles of hospice care, even though she died before the hospice movement gained traction in the United States. Hospice consists of palliative care for the terminally ill, as well as emotional—and sometimes spiritual— care for the entire family. But a good hospice is not in the business of dying, but of living right up to the end. Most individuals in hospice receive care at home or in a long-term nursing facility they’ve called home. In recent years, there has been a steady increase of institutional hospice settings, but there’s nothing institutional about rooms that are filled with homey furniture, throw rugs, and paintings on the walls. You may even see someone’s family pet ambling down the hallway. But the movement needs help.
It’s unfortunate that so much attention and so many resources are funneled into legalizing euthanasia while the hospice movement struggles to meet increasing demands. Between 2000 and 2012, the number of patients served by hospice grew by 58 percent, yet during those same years, the number of providers grew by only 39 percent. As you can imagine, lack of providers can lead to less than quality care. Yet studies show that patients who are referred to hospice care sooner rather than later receive better overall care. They live longer, have a better quality of life during their last days, suffer less depression, and, for some populations, have care costs that are less than the costs for those not in hospice. This is especially important to note, as nearly 90 percent of hospice care in the United States is paid for through Medicare, and nearly half of US deaths transpired while the individual was under hospice care.
In this climate of examining medical health costs and government spending, those statistics cannot be ignored. We would communicate a far more compassionate message to those who are terminally ill and dying—and to be honest, even to those for whom dying is a long way off—if we focused our energies on helping people die right.
To die right. That’s what it’s all about. Unfortunately, euthanasia has become a popular topic because people are led to believe that death by suicide or homicide is more dignified than dying naturally. True, bad medical treatment could be administered at the end of a person’s life, but that is true of medically assisted deaths too. What is not true of physician-assisted suicide, however, are the good treatments, the long-practiced mercy symbolized in hospice care. It’s the answer for those who fear a death devoid of dignity as the result of bad medical treatment.
We can help debilitated or terminally ill people live right. We can alleviate the hopelessness that drives debilitated people to despair by advocating attendant or respite care for stressed-out families. We can support the family with counseling, regular visits, or financial aid. Living in the shadow of dying can be a lonely, desperate time for a person who is severely incapacitated or terminally ill. Our society, especially those who fear God, cannot cringe at the misery that needs mercy or shun the burden that requires bearing. We must be the Lord’s hands and heart to those who hurt.
Oh to Be a Burden
Yes, you may think, that’s easy for you to say.
And it is easy for me to say. As a quadriplegic, I have been on the receiving end of other people’s help for many years. My caregivers and my husband are experts in giving, even when it hurts, and often they are bone-tired. Part of me feels guilty about that. But God designed my disability to make me not independent, but interdependent. And so, as the recipient of my husband’s love, I do absolutely everything I can to support him and my other caregivers with gratitude, as well as to pray for them in their weariness. I also look for ways I can lessen their load. It’s the least I can do. It’s the family thing to do.
We tend to forget this—especially as we grow older or a family member ages or sustains a life-altering disability. Yet this is what families were designed for—especially Christian families. The Christian family showcases to the world that sacrificial service is normal service. Followers of Christ are supposed to give, even when it hurts. We serve, even when—and especially when—we’re weary or discouraged. Christ calls us to look out for others’ interests before our own. And if we do feel put-upon, then we find our example in Christ, who “learned obedience from what he suffered” (Hebrews 5:8).
An elderly parent or a mother who receives a diagnosis of multiple sclerosis may be quick to say, “I don’t want to be a burden to my family, and I will do everything I can to see that I’m not!” They assume they are doing their family members a Christian service, as if it were their duty not to have to depend on anyone for help.
Gilbert Meilaender wrote in First Things, “Families would not have the significance they do for us if they did not, in fact, give us a claim upon each other. At least in this sphere of life we do not come together as autonomous individuals freely contracting with each other. We simply find ourselves thrown together and asked to share the burdens of life while learning to care for each other.”
I have many friends with disabilities who have opted to go into a nursing home to spare their families the weight of caring for their needs. They don’t want to be a burden. When this thinking becomes the norm, we stop living in the kind of moral community that deserves to be called a family.
A Dying Breath
No matter how we plan for it, death is still the last outrage. But we can make dying as peaceful and serene as possible. You actually can go through death in peace, even serenity. It all depends on the way you view life.
If you believe your earthly life will continue uninterrupted, then you will never be prepared for your final passage, no matter how many documents you sign.
If you believe life has no meaning beyond what you’re doing today, then death will be to you an ugly intrusion full of bitterness.
If you believe life is a tiresome struggle weighted with failures and disappointments, then dying may be for you a fatal escape.
But if you accept life as a gift from God, then dying is a part of the given. You can prepare for it. You can approach it. Because you can say with confidence, “For to me, to live is Christ and to die is gain.”
Questions for Discussion and Reflection
Be Prepared
Given what you’ve read in this book and have heard in the media, what steps will you take in the future to be prepared? Think about why you would or wouldn’t choose a particular step.
• Have a family meeting.
• Write down your wants and wishes on a notepad and give it to your spouse. It’ll suffice.
• Sign an advance care directive with a provision for a health care proxy.
• Review your advance care directive every year and make sure it’s up-to-date.
• Wait a while to see what happens in the courts.
The role of health care proxy carries with it great responsibility and doesn’t always solve the dilemma. Consider the following scenario:
Mary, a Christian nurse, signed an advance care directive with a provision for a health care proxy while attending a seminar about advance directives. In it, she expressed that she did not want to go on long-term life supports should she become mentally incompetent. Her husband agreed to be her health care proxy. As a result of a serious automobile accident, Mary is now in a coma. Her husband now must make the decision whether or not to withdraw his wife from life supports.
Should he or shouldn’t he ask to have Mary’s life supports removed?
Not every situation will have a piece of paper providing some kind of direction. Consider this scenario:
George, an adult with Down syndrome, has been attending your church. He has developed many friends at church. He lives in a residential facility, and his legal guardians are distant relatives who reside in another area of town. George recently developed a degenerative hip problem that, if not corrected, will result in an inability to walk. The director of his residential facility approaches you, concerned that George’s legal guardians have vehemently opposed the operation.
To what extent should you get involved in this decision about George’s treatment?