If you’re reading this, you will die. Of course, you’ll also die if you’re not reading this. Death is inescapable. We have a hard time accepting that, and we often avert our eyes from end-of-life decisions. The result is that many of us die in precisely the ways we most fear–in pain, in a hospital, alone, after aggressive but futile medical intervention. Creating a living will can help you make your death more peaceful and less agonizing. But it’s not the only thing to do. In advance of the Zócalo event “How Doctors Die,” we asked several healthcare professionals the following question: What’s the most important thing, apart from making a living will, that you can do to take control of your final days?
Get yourself a family
The truth is, in our final days it’s unlikely we’ll be able to take control. So perhaps the question really is: What is the most important thing I can do to prepare for the end of my life? My answer is: Get yourself a family! Families make the best advocates and caregivers. Family members care for one another in ways that are mutually responsive, highly personal, and, when necessary, fierce.
If you are single, live alone, or are proudly independent, read on. Jeffersonian individualism works well in civil matters, but human beings are social animals. Our relationships are fundamental to our wellbeing–especially during times of need, including the waning months of our lives.
I’m not suggesting that you get married or adopt someone to plan for old age (not that it would hurt.) Bloodlines and marriage are not the only family bonds. At some depth of friendship, individuals are rightly considered family. Getting a family means developing a group of people who matter to you and for whom you matter.
Is caring for a vulnerable family member a burden? Yes, but it’s one that families are willing to shoulder. When someone belongs to your family, his or her wellbeing is intertwined with your own.
If you are lucky enough to already have a family, invest in it by mending or tending your relationship with each member. Remember, no one is perfect. Thankfully we love people anyway. Forgiveness, gratitude, and love sustain the healthiest of families.
You needn’t be dying to begin preparing for your final days. I suggest people ask themselves, “What would be left undone or unsaid if any of the people I love most were to die suddenly?” You might consider saying these four things:
Please forgive me.
I forgive you.
I love you.
That way, whenever the time comes, you’ll be better able to say goodbye.
That much we can control.
Dr. Ira Byock is director of palliative care at Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire and author of The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life. He can be reached through www.TheBestCarePossible.org.
Paradoxically, the most important thing that we can do to take control of our final days is to realize that we won’t be in control. It goes without saying that in the end many of us will be in a weakened state both mentally and physically. We will be unable to make the most basic decisions about what happens. This is a difficult situation in a society that values control and denies death. It’s one reason why so much money is spent to keep people alive during the last six months of their lives. We must accept our mortality. Even the best and most expensive medical technology will not keep us alive indefinitely.
How do we get to this acceptance? One would expect a religious view to help, but often this isn’t the case. A study published in the Journal of the American Medical Association in 2009 found that religious patients were more likely to receive aggressive care during their last week of life. This is consistent with what I often see. A belief in miracles, even in the form of medical interventions, can work against a simple acceptance of death.
But I believe that acceptance will eventually be forced upon us. Even with reform, healthcare costs are unsustainable, and expensive end-of-life care is a major factor. When public and private insurance programs begin seriously to take on this issue, one response may be for people to face death rationally. Perhaps there will even be a growth in formal and informal discussion groups that find inspiration in things like the Serenity Prayer. In our final days we need the wisdom to accept what can and cannot be changed.
Rick Mathis is Director of Research and Analysis at the Ochs Center for Metropolitan Studies in Chattanooga, Tennessee. He is the author of several books and articles on healthcare and on spirituality and daily life.
Talk in depth to family and friends
There are really two different questions here: what can be done in advance to take control of our final days, and what can be done in the moment? In advance of our own death, each of us should have conversations with our closest family members and friends outlining our feelings about treatment at the end of our lives. If we have done this, then our relatives, and friends, can help us have the kind of death we most prefer.
Intensive care units are able to keep patient’s bodies alive for days even when there is little hope of the person surviving, much less recovering. Is it your preference to have the hospital keep you alive, hoping against hope for a turnaround in health? If so, know what you are choosing: being unconscious in an intensive care unit with a tube down your airway so that a ventilator can breathe for you–and aggressive CPR if your heart does stop.
Individuals who prefer to limit the amount of medical intervention at the end of their lives will have more opportunities to talk with family members and friends throughout their decline and can die at home or in the more home-like setting of a hospice. Their pain will be controlled, their bodies cared for, and they will have much greater privacy and autonomy than the hospital typically affords.
Knowing when the time to choose has arrived can be difficult because doctors are often poor prognosticators. Press physicians for full and detailed information. Remember that how a person leaves this world should be that individual’s decision.
Theresa Brown, a clinical nurse, is an opinion columnist for the New York Times, and the author of Critical Care: A New Nurse Faces Death, Life, and Everything in Between.
Create a living living will
Find yourself a living living will–a living will that is enhanced by someone with intimate knowledge of your personality and wishes. As a hospital-based internist, I know firsthand that living wills are very often a Sesame Street approach to something as complicated as a NASA shuttle launch. Do you really want Gonzo at the controls as the rockets fire? Living wills are a great cognitive exercise, a way to begin thinking about how one might want the end to go; but they cannot possibly address all the permutations that often arise in end-of-life situations.
Here’s some common living will phraseology that makes my point: “I would want all treatment unless there was no hope of meaningful recovery.” Fine, but what does “no hope” mean to you? One in a thousand chance? One in 10 thousand? One in a million? And trickier still, what constitutes a “meaningful recovery”? A life where one is perpetually nursing-home-bound? At home, but unable to walk? Able to walk but unable to speak fluently?
These are some of the tricky questions that only a living living will can answer. That’s why you need someone with the personal (loves you and knows you well) and legal (power-of-attorney) authority to speak to your wishes when you cannot. And if need be, this person should be able to forcefully advocate for you, because “Do Everything” is the American healthcare system’s current default setting, and that’s typically what you’ll get if you don’t demand otherwise. And then it’s not your life, really: it’s the system’s.
And if, because of advanced age or illness, the end seems near, consider filling out a POLST (Physician Orders for Life-Sustaining Treatment) with your physician. As a signed doctor’s order, this can be particularly valuable in emergency situations where your living living will is either not available or has yet to be notified.
Dr. Craig Bowron is a hospital-based internist (“hospitalist”) in Minneapolis. His writing has appeared in The Washington Post, Slate, and The Huffington Post.
Decide what matters most
The most important steps you can take to be prepared for living with a serious illness is to begin thinking about what matters most to you. Think about that you would want done if you were hit by a truck tomorrow and were in a permanent vegetative state thereafter. For example, if you are the kind of person for whom life at all costs–even if you could no longer recognize and interact with your loved ones–is the highest priority, you should tell your doctor and your family that your goal is to live as long as humanly possible no matter what. If, on the other hand, you are like most of my patients, quality of life may matter most to you. In that case, articulate to yourself and to your family and to your doctor what makes life worth living for you. It may be the ability to recognize and have meaningful interaction with the people you love. It may mean the ability to be independent and active. It may mean not being a burden on your children. It may mean being able to read or write.
As long as you have your wits about you, you can and will make your own decisions about medical care over the course of an illness. It is when (and this eventually happens to nearly all of us) we lose that ability that other people will have to make those decisions on your behalf. If you don’t know what matters most to you, how can they know? Humans are not mind readers.
If you find all of this overwhelming, then seek help from a palliative care team in your area. You can find a team in your area by visiting www.getpalliativecare.org. Palliative care is specialized medical care for people with serious illnesses. It’s focused on providing patients with relief from pain and stress. Unlike hospice care, palliative care can be applied to anyone regardless of prognosis, even when full recovery is expected.
The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient’s other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness–and it can be provided together with curative treatment.
Dr. Diane E. Meier is Director of the Center to Advance Palliative Care (CAPC).
Take four essential steps
Most of us will die of progressive chronic illnesses. In our final days, most of us will experience suffering. Some of it may be physical: pain, tiredness, shortness of breath, and nausea. Some of it may be emotional: fear, despair, family conflict, and spiritual crisis. We have engraved in our DNA that dying is not a good idea. Fortunately, there has been great progress in reducing physical and emotional suffering.
In the past 28 years of working full time in helping patients and families, I have learned that there are four things we can do to take better control of our final days.
1. Access a good palliative care team. This team should be led by a palliative medicine specialist who works with a team of colleagues, including a counselor, rehabilitation professionals, a chaplain, and a palliative care trained nurse. The team should start seeing you while you’re still receiving treatment. Palliative care units are intensive care units for physical and emotional suffering and must be on hand.
2. Get help from family and friends. For the last two months of life you will probably have great difficulty doing laundry, housecleaning, shopping, or even going to the bathroom. If no one lives with you, then you must either move in with someone you love or have someone you love move in with you.
3. Set aside money. Ending your days well can be expensive. If you have the resources, consider hiring someone to help out with chores and transportation so that family can sometimes take a break. You might also want to move to another place to receive regular care.
4. Seek spiritual and religious care. If you belong to a religious denomination, then you may want to reconnect with your community of faith. If not, take advantage of programs that will help you find meaning your life and your legacy.
These four measures will not eliminate all your suffering, but they will for sure help you live better during your final days.
Dr. Eduardo D. Bruera developed and leads the Department of Palliative Care and Rehabilitation Medicine at The University of Texas M. D. Anderson Cancer Center.
Inform yourself of the following basics
People have a basic right, protected by U.S. law, to be free of medical treatments they do not want. When a person is unable to make medical decisions, this right is protected through surrogate decision-making, authorized in all states.
Advance directives (sometimes known as “living wills”) allow people to document any explicit instructions they may have concerning future medical treatment.
Portable medical orders (including POLST-type documents authorized in many states, see www.polst.org) are another type of documentation, suitable when a person has been diagnosed with a serious condition and medical decisions are foreseeable.
Whether or not a person wishes to complete advance directive to document explicit preferences about medical treatment, appointing a surrogate (also known as a “proxy” or “agent”) and discussing his or her values, preferences, and goals with the surrogate is perhaps the most important step a person can take. A knowledgeable surrogate who is prepared to make medical decisions if a person is unable to do so is able to answer the question “What would this person want?” This is a key question when a person’s advance directives (if any) do not address the situation at hand. A knowledgeable surrogate can collaborate with physicians and other healthcare professionals to clarify the patient’s preferences and goals and to apply this information to different medical circumstances and changing conditions.
Advance care planning is a process that helps people to think about and describe their values and preferences about future medical treatment, in the context of their goals for their own lives (for example, spending time with loved ones, or seeing a child or grandchild graduate, or continuing to pursue meaningful work or interests), and to ensure that these values and preferences are known in future care. Medical professionals are increasingly aware of how to conduct an advance care planning process, including the documentation of advance directives and the identity of a patient’s surrogate. They can also help their patients to clarify their goals and preferences and develop a care plan reflecting the patient’s values. Advance care planning ideally involves the patient’s appointed or intended surrogate, as it is essential for a surrogate to be knowledgeable about the patient’s goals and preferences and to be ready to carry out the surrogate’s responsibilities if needed.
Nancy Berlinger, Bruce Jennings, and Susan M. Wolf are the authors of The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life: Revised and Expanded Second Edition (Oxford University Press, in press).
Lay out your goals–and communicate them
First, step back and decide what your goals are and how you want to live. Second, communicate those goals to your loved ones, your physicians, and the hospital where you are most likely to receive care.
Ideally, you’ll begin taking these steps long before you approach the end of life, review them regularly, and make adjustments as your health and other circumstances change. A living will is not irrevocable.
What do I mean by goals? Let’s say you are 85 and still active. You are diagnosed with cancer. Do you want to take a shot at being cured? Or do you want to live out your remaining days as normally as possible, without aggressive medical treatment?
Surgery followed by chemotherapy may buy you some extra time. But you also risk dying from the surgery, becoming debilitated by the hospital stay, and being made very sick by the chemo. If you reject aggressive treatment, the cancer is likely to kill you. But with proper pain management you may live a relatively good life for your remaining days.
Communication is much more than filling out a form. Talk to your family about your vision of the end of life. These conversations are often very hard, and family members will frequently disagree–with you and with one another. But it is important that they understand that this is your choice, and it is their job to support you.
Do the same with your doctor. If you express your wishes to her face-to-face, she is more likely to respect them. This isn’t easy in today’s often-impersonal world of healthcare. But it is possible.
Finally, assign one person to be your healthcare advocate if you can no longer speak for yourself. End of life is no time for fraught family negotiations. Put someone you trust in charge, and make sure everybody knows whom you picked and why.
Howard Gleckman is author of Caring for Our Parents (St. Martin’s Press) and a resident fellow at The Urban Institute. He blogs at www.caringforourparents.com.
*Photo courtesy of mcsquishee.