CHAPTER TEN

Taking Charge at the End of Your Life

I so wish my mother, who died of ovarian cancer, had done a living will. When she refused to eat, I was still fighting to save her through whatever artificial means the doctors could come up with. I’m so sorry I put her through that. It did not make her life one bit better.

—Suzie, focus group participant

How we die, the circumstances under which we die, what happens before we die, is under our control.

—Dr. Diane Meier, director of the Center to
Advance Palliative Care at Mount Sinai
in New York, in the PBS documentary
On Our Own Terms

On the surface, this chapter heading could lead you to believe that my focus here is to help you ensure that decisions at the end of your life are made the way you want them to be. And, of course, that is my aim.

But I also want you to go beneath the surface and realize that in most cases, it is not about you taking charge at the end of your life. It’s about you preparing and empowering your kids to take charge as you approach that final stage.

The reason for this collaborative approach is that it is highly likely that you won’t be physically, emotionally, or mentally able to direct the final proceedings. It addresses the challenge for someone acting on your behalf to weigh the options and make decisions and to articulate what should be done in a way that reflects your thoughts about the end of your life.

This is a very real problem because, according to a 2003 Rand study, roughly 40 percent of deaths in the United States are preceded by a period of increasing frailty and often dementia lasting up to a decade.

As a result, it is critical that you start these conversations (as well as the rest of the Other Talk) now, while you are mentally sharp. Quite simply, the longer you wait, the less effective these discussions with your kids will be, due to the natural deterioration of the aging brain. Here’s how Branch Rickey, the legendary baseball general manager in the 1920s through the 1950s, described that imperceptible evolution:

First, you forget names, then you forget faces, then you forget to zip your fly, then you forget to unzip your fly.

In preparing for the end game discussion in the Other Talk, you’ll want to take steps in three critical areas: guiding principles, parameters for medical treatment, and hospice.

Step 1. Establish Your Guiding Principles

The first step in making your kids confident and empowered in taking charge when the time comes is for you to confront and define what “being alive” means to you as you near the end.

For some people, it is fighting for every last breath: “Even one more day would be important to me. I would do everything I could to hold on to life.”

For others, it is living intensely, yet comfortably, in the time remaining: “I would rather be able to do what I want, to be with my kids, to enjoy life, even if it’s for a shorter time.”

Of course, neither one is the better approach because it is such a personal choice. But if you start now to build a clear understanding of your preferences with your family and your doctors, you can dramatically increase your odds of getting what you want.

Not surprisingly, coming to grips with what “being alive” means to you is easier said than done. My wife and I have found two online tools helpful in confronting this issue:

Five Wishes, developed by Aging with Dignity. This booklet you fill out can help you articulate your feelings and opinions about the person whom you want to make care decisions for you when you can’t; the kind of medical treatment you want or don’t want; how comfortable you want to be; how you want people to treat you; and what you want your loved ones to know.

Proxy Quiz for Family or Physician, created by the American Bar Association (ABA) Commission on Law and Aging. This document has 10 questions about your personal medical preferences, which your kids, your doctor, and you fill out separately. You then compare answers to find out where you need to correct the perceptions of your kids and your doctor on how you want to be treated at the end of your life.

One thing is certain: if you elect to procrastinate defining what “being alive” means to you and fail to empower your kids to carry out your own guiding principles, you will find yourself in the clutches of the medical profession’s default position of treatment until cured (or dead).

There are a number of reasons for the medical profession’s mindset.

Medical technology allows today’s doctors to bring a dizzying array of medications and techniques to the table. Robert, one of my focus group participants with 10 years as director of medicine at a major Chicago hospital, painted this “because we can” scenario:

There is always another layer of hope that we’ve created in medicine. We’ve got so many alternatives.

If you don’t have to pay for it and if there is no downside, you don’t want Mom to miss an opportunity to continue living.

That’s not always a good thing. A corollary to the power of technology is that it can cloud medical judgments. Victor, another one of my doctor participants, described the moral dilemma this way:

Thanks to medicine’s prowess in sustaining life, it is harder than ever to know when to stop.

And because we as doctors are trained to “find the cure,” we often forget to ask ourselves, “Is the illness getting the attention, or is the patient getting the attention?”

In addition to the medical advances, Medicare is set up to fund treatment until patients are cured. It’s the reason that more than one-third of all Medicare spending is in the final year of life and one-sixth in the last month. As reported in a June 2009 article in The Economist:

The trouble with health care in America, says Muriel Gillick, a geriatrics expert at Harvard Medical School, is that people want to believe that “there is always a fix.” She argues that the way Medicare is organized encourages too many interventions towards the end of life that may extend the patient’s lifespan only slightly, if at all, and can cause unnecessary suffering. It would often be better, she thinks, not to try so hard to eke out a few more hours or weeks but to concentrate on quality of life.

We have been convinced by popular culture of the omnipotence of medical technology. In a 1996 study of a full season of medical shows like ER, 75 percent of patients who received CPR during cardiac arrest survived, and 67 percent recovered enough to leave the hospital. The reality is different, according to a February 2012 Wall Street Journal article: “a 2010 study of more than 95,000 cases of CPR found that only 8 percent of patients survived for more than a month. Of these, only 3 percent could return to a normal life.” The upshot is that, while the doctor is busy trying to fix the problem, the patient as a human being can get lost in the shuffle. As one of my focus group participants, a doctor, observed:

We’re prolonging life but we’re also prolonging dying. Hundreds of thousands of people are surviving longer with advanced dementia or traumatic brain injuries or in coma states. In addition, for their loved ones, coping with the ambiguity of “not quite dead” creates a whole other level of stress.

Nadia, one of my participants, was born in Russia and was practicing medicine in the United States on a fellowship. She described her utter disbelief at how dying patients are treated in our society:

Everybody is treated until they are dead. Even if they are semi-dead, they are still treated. The patients are lying there at age 95, 96, 100, debilitated, demented, don’t recognize anyone, don’t eat [and] don’t pee [on their own]. They’re still treated.

Perhaps best capturing the emotional angst that can be visited on your kids by the medical community is Lester, 58, who is his dad’s caregiver:

My father was at a very advanced stage of Alzheimer’s. But the doctors kept hounding me. They would call me at work three or four times a week, telling me, “You shouldn’t send him back to the nursing home. You should leave him in the hospital.”

The fact is, the decision had been made a year ago with a healthcare power of attorney. It was very emotionally trying for me. I knew he was going to die shortly. But they made me feel bad by saying that if I took him out of the hospital, I would be the one who is causing his death.

Step 2. Set Parameters for Your Medical Treatment

Step 2 in taking charge of your life (versus abdicating it to the medical community) is to put your preferences in writing. Equally important is to distribute and discuss your wishes with your family members and your doctors to ensure that your goals will be achieved.

An effective and relatively inexpensive way to accomplish this is to consult with your legal advisor, then draw up a healthcare power of attorney.

This document establishes your designated agent who will make healthcare decisions for you if you are not able to do so. While rules can vary by state, typically responsibilities include the power to require, consent to, or withdraw any type of personal care or medical treatment and to admit you to or discharge you from any hospital, nursing home, or other institution.

A specific statement is included that allows you to address your opinion on life-sustaining treatment. For demonstration purposes only, here is the language for the three choices from the Illinois statutory short-form power of attorney for healthcare:

I do not want my life to be prolonged, nor do I want life-sustaining treatment to be provided or continued if my agent believes the burdens of the treatment outweigh the expected benefits. I want my agent to consider the relief of suffering, the expense involved, and the quality as well as the possible extension of my life in making decisions concerning life-sustaining treatment.

I want my life to be prolonged, and I want life-sustaining treatment to be provided or continued unless I am in a coma that my attending physician believes to be irreversible, in accordance with reasonable medical standards at the time of reference. If and when I have suffered irreversible coma, I want life-sustaining treatment to be withheld or discontinued.

I want my life to be prolonged to the greatest extent possible without regard to my condition, the chances I have for recovery, or the cost of the procedures.

If you are in the “do not prolong life at any cost” camp, you will also want to explore two healthcare directives: the living will and the do-not-resuscitate (DNR) order:

The living will establishes that you do not want your death to be artificially postponed. It states that if your attending physician determines that you have an incurable injury, disease, or illness, procedures that only prolong the dying process should be withheld or withdrawn, and only the administration of medication, sustenance, or surgical treatments (as determined by your attending physician) that provide comfort care should be used. This document must be signed by two witnesses who will not benefit from your death.

The do-not-resuscitate (DNR) order is different from the healthcare power of attorney and the living will in that neither your healthcare agent nor you can prepare it. Rather, it is a written order signed by your physician that instructs other healthcare providers not to attempt CPR if your heart has stopped beating and if you have stopped breathing during cardiac or respiratory arrest.

Since it is often relevant during an emergency situation, it is advisable to carry a DNR card and to distribute the document to family members and your doctors.

Once you have distributed your “what being alive means to me” documents (the healthcare power of attorney and, if relevant, the living will and the DNR order) and thoroughly discussed them during the Other Talk, your family and you should acknowledge the possibility of revisions. Every time your health status changes in some significant way, you should have another discussion to clarify your views and expectations.

It is okay for you to move the goalposts on issues pertaining to the end of your life. You just need to make certain that the people in your world know that you have moved them.

Step 3. Consider the Hospice Route

The final area for your consideration is to consider the pros and cons of hospice.

Hospice at the end of life isn’t for everyone, and it certainly isn’t for those who want to battle until their last breath. When you enter hospice—which you can often do either at home or in a facility—you agree to give up medical treatment. For you to qualify for Medicare coverage of hospice, at least one doctor must certify that you have six months or less to live and you have agreed to forgo life-prolonging treatments like dialysis, chemotherapy, and radiation.

The essence of hospice is that it isn’t about perpetuating life; it is about perpetuating quality of life.

Conventional healthcare generally believes that when there is no possibility of recovery, the job is complete.

Hospice, on the other hand, believes that as long as a person continues to live, a great deal can be done to keep the patient as comfortable as possible, support the family as much as possible, and make the quality of life as fulfilling as possible, for as long as possible.

It achieves this by controlling a patient’s pain and symptoms medically and, together with psychologists and social workers, by helping the patient grapple with depression, anxiety, fear, and spiritual issues. In addition, patients are encouraged to talk about feelings toward family members, regrets, and fences that may need to be mended.

Equally important, hospice treats family members as part of the plan for care.

Nurses visit once a week (or more frequently as needed), and they are on call 24/7 to respond to crises and questions on the phone or in person. Social workers visit as often as necessary to provide emotional support as well as to help find resources for wills, powers of attorney, funeral plans, and other needs. Home health aides assist with bathing, personal care, and homemaking to relieve family caregivers so they can take a break. Bereavement counselors provide care to the family for up to a year after the patient’s death.

Jacques, one of my internist participants, painted the picture of hospice this way:

It’s about not suffering. It’s about dignity and control and respect. It’s about being able to go home, where you can just be comfortable with pain medicine and oxygen and not be in a hospital.

What may surprise you (as it certainly amazed me) is that hospice care doesn’t shorten your life span, even though the hospice patient stops medical treatments and is permitted high-dose narcotics to combat pain. In fact, a study in the 2007 Journal of Pain and Symptom Management found that hospice patients lived 29 days longer on average than those who did not receive such services. As reported in the New England Journal of Medicine, a 2010 study of patients with advanced lung cancer who got palliative care along with standard cancer treatment found they had fewer symptoms of depression, received less chemotherapy, underwent fewer surgeries and other medical procedures, spent fewer days in the hospital, and lived 2.7 months (33 percent) longer that those who did not get those services. And hospice costs are usually covered all or in part by Medicare and private health insurance.

Here’s a real-life example of how hospice can impact the final days, as told by Dr. Martha Twaddle, medical director of the Midwest Palliative & Hospice CareCenter:

This guy Marcus had a recurrent skin cancer that had gone back into his neck and wrapped around a carotid artery; there’s nothing they can do.

So I walk in and say “Sir, how much do you know about your illness?” He’s clueless. He’s going to get married, he doesn’t have a will, he has a major merger on the table with his board of directors.

So I say, “Sir, I’m going to be really straightforward with you. We don’t have a lot of time here. Based on what’s going on in your neck, I would estimate your life expectancy in terms of hours, if not days.”

To his credit, he fit into the next seven days his will, his financial power of attorney, his wedding, and his negotiating instructions for the merger talks. Then he gave himself to hospice and quietly spent the next three weeks with his kids and his new wife.

How can hospice extend your life? Perhaps you live longer only when you stop trying to live longer. You are able to spend the remaining time at home, surrounded by your stuff, taking the opportunity to prepare yourself and your kids for the last sentence. You have an uninterrupted space to reminisce, talk about unresolved issues, and say your goodbyes to family and friends in a familiar, comfortable, pain-free setting.

Next Steps

We’ve come to the end of the action chapters so I want to leave you with a practical and a conceptual next step:

1. Explore the reality of the do-not-resuscitate (DNR) order. As I mentioned in Chapter 3, the Terry Schiavo case motivated my family to discuss the pros and cons of “extraordinary efforts to sustain life.” If you recall, the four of us initially didn’t agree on what my wife and I wanted done and not done toward the end of life, but we fixed it by putting it in writing.

But my wife, Pam, and I soon realized that we needed to go further, that we needed to go beyond the hypothetical guessing what our personal preferences would be at the end. We needed to do a reality check of what actual conditions would trigger the DNR.

Here’s what we did and here’s what I would recommend to you:

Schedule a meeting with your primary care doctor so that he or she can describe to your family and you the reality of conditions like late-stage cancer and dementia or severe brain damage.

Establish with your doctor your personal trigger points for a DNR. You should also take this opportunity to fill out and discuss with your doctor a Physician Orders for Life-Sustaining Treatment (POLST) form. This document states what kind of medical treatment you’ll want toward the end of your life. Because it is signed by both your doctor and you, a POLST enhances the control that seriously ill patients have over their end-of-life care. Every state in the United States has slightly different rules pertaining to a POLST, so I suggest you go to the Appendix, “Online Resources for the Other Talk,” in this book to find relevant resources in your own state.

If and when you suffer a life-threatening accident or illness, and assuming you are conscious and lucid, meet again with your doctor and family to confirm your DNR instructions.

For my last recommended next step, I want you to step back from all the mechanics of financing your uncertain future, selecting the best living arrangements, getting the medical care you need, and taking charge at the end of your life.

2. Remind yourself and make clear to your kids how the Other Talk will benefit them. The Other Talk:

Teaches them to be flexible and adaptable as things change in unexpected ways

Empowers them to make the tough decisions if and when you can’t

Gives them a template from which to discuss, explore, educate, and think about end-of-life issues with their own children

Demonstrates that “taking care of the kids after I’m gone” isn’t just a financial issue

Adds a dimension to your family relationship that most kids will never know