The Will to Live and the Living Will: How to Live (and Die) on Your Own Terms

AnnMarie Q. McIlwain

Paper piles nearly cover the windowsill as his wife tries to concentrate on paying bills. I am here to help translate what the various doctors and nurses are seeing when I notice her husband’s eyes are suddenly open. For the past few days her husband of over 55 years lay almost comatose as the family wrestled with decisions related to his care, all of which came down to what medical interventions would Dad want if he was able to speak for himself. When he suddenly and with some effort begins talking, I suggest we call one of her sons. With the phone next to her husband’s mouth, hoping he has the strength, if only for a minute, his youngest son describes the situation. During this brief moment of lucidity—one of a handful during the final week of his life–the family is trying to get the cherished husband and father to guide them on how would he want to live and, ultimately, choose to die. Under what conditions would he like to be kept alive? They want to be at peace with the medical choices they need to make on his behalf, knowing that some of these decisions could lead to or hasten his death. They want to honor his wishes.

Understanding what constitutes quality of life is the single most important question you need to answer when facing end of life decisions for yourself—or for a loved one, be it a parent, spouse, partner, or other close relative. Based on my observations, many families are unprepared to answer this question—and it is often when it is too late, when a family member has suffered a major stroke, or unable to voice his or her own wishes, that this question arises—when you and other family members may also not be in the right emotional state to decide, or may find you are not all on the same page—or, in extreme cases, when decisions are made for you based on state laws that overrule when a Do Not Resuscitate order or some other directive is not in place.

What Makes a Life Worth Living?

As Atul Gawande, a physician and the author of Being Mortal explains it, asking yourself what makes you happy and what worries you can help get to the answers.

For some, the answer is straightforward, but for most, we never think about some of the things that matter.  Being able to communicate, be understood, feed yourself, toilet independently, read or walk are all examples of how to define quality of life on your terms. Maybe it is watching a baseball game on TV. Said another way, what type of joy do you need to offset the limitations brought on by terminal illness?

 As for your worries, is there a point at which you wouldn’t want your family to be burdened–sacrificing considerable time with their own children, risking their jobs or perhaps their own health to care for you?

On a more practical level, is there a financial cost that you would consider too great to keep you alive? Are you willing to risk all of your life savings for instance and how does that square with the quality of life you desire for your survivors once you are gone?

These are the kinds of difficult but necessary decisions that save the living an immeasurable amount of emotional anguish if we could just have the discussion with loved ones when we are well and get them down on paper (and possibly video) so that family members are guided to a family member’s end-of-life desires that honor their own expectations and requests and spare their family the added emotional conflicts when decisions need to be made at a fragile time. To see what that feels like, the Netflix documentary Extremis takes you into an ICU when decisions are being considered without clear direction. It puts everyone from doctor to family in a quandry that is heart breaking. 

Where to Start When You are Talking About End-of-Life

A life-affirming and positive way to start thinking about this difficult subject can be found in the new book When Breath Becomes Air, an elegant memoir by the late Paul Kalanithi, a young physician who, at the age of 36, is diagnosed with stage IV lung cancer.  He describes his journey to define a meaningful life for himself as he is dying, deciding on his own terms, but with the support of his spouse, what makes life worth living. The post script by his wife, also a physician, is equally compelling and worthy of consideration.

Once you are ready, there are several documents that can be completed to provide direction to family members when faced with medical decisions on your behalf. They include An Advance Healthcare Directive (aka Living Will) and a Protective Medical Decisions Document. These legal documents provide clear direction to physicians about life-saving procedures and designate individuals to carry them out.

A final word (no pun intended)

For some, there is a fear that making decisions about end-of-life and putting them in writing might hasten the outcome. Others worry that initiating the tough conversations will bring on unnecessary emotional anxiety and are best left to “another day”. In reality, it is perhaps the most selfless thing you can do to discuss your wishes with your loved ones and encourage them to think about at what price is life worth living, while sharing your own wishes and letting them know that you are taking the necessary steps to make sure your request will be carried out.  The conversations might be difficult, family members may disagree, if religion is a factor, you might consider discussing your plans with a trusted clergy member, but ultimately, regardless of whether you want extraordinary medical interventions or prefer humane and minimal efforts be made in the event you are terminally ill and incapacitated, it is important that you have the proper documents in place and in the care of people you trust, before you might ever need to put them to use. 

Taking control of your death while full of life is the best medicine for you and your family.

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  1. The problem is medical staff project THEIR wishes on to other people, and too many of them presume any disability, no matter how minor, makes life intolerable. The most frequent experience shared by fat people, people with disabilities, people with congenital conditions or visual obvious scarring, etc. is the request that we sign DNRs. When you say no, you get lectured at as if you were a five-year-old. Or, worse, anyone accompanying you is pressured to pressure you to get you to sign. Nothing like having someone tell you your life is worthless when you’re already dealing with an injury or illness. Most of us hone the fine skill of telling these ghouls to go fuck themselves, but not everyone is that strong.