Living Will, Living Well

Disease makes us vulnerable; it can even render us voiceless. That is, to put it mildly, a disquieting thought. Fortunately, there’s a form that addresses this exact issue: an advance directive. An advance directive (AD), more commonly known as a living will, is a legal document that outlines a person’s healthcare preferences. AD are used when a patient becomes unable to make decisions for themselves (i.e. becomes incapacitated). They’re a relatively new innovation (the term “living will” was coined in 1969), and despite their benefits, they have yet to become commonplace in the US1.

Expect the worst…

There are two types of AD: a living will and a power of attorney (both can be included in one document). A living will is a list of specific desires, such as a do not resuscitate (DNR) order. This can be trickier than it sounds, because it requires some level of prediction. Writing a living will, you have to try to account for the types of illnesses that might afflict you in the future and the interventions that could be considered for your treatment1.

AD can require not only foresight, but also trust. The second type or component of an AD, a power of attorney, appoints a person (usually a family member) to act as the patient’s surrogate or proxy in medical decisions. The power given to this person can be limited (i.e. you can stipulate the kinds of decisions they can make)1, but the relationship is still intimate. A patient relies on the proxy to act with his or her wishes in mind, even if they disagree. The flexibility of a surrogate- they can adapt to any situation that arises- makes the power of attorney an especially important part of an AD.

Choosing a surrogate is serious business, because proxies have real power. One study found that surrogates made some or all of the medical decisions during the patient’s stay in 82% of cases where one had been appointed5, and another found that patients with a proxy were significantly less likely to die in a hospital than those without one6. If you don’t choose one for yourself, one will be chosen for you; when no surrogate is named, state surrogacy statues are used to determine which family member will serve as a proxy and what the limits of their power are5.

living will
Speak now.

The uncertainty and intimacy of creating an AD, not to mention the morbid nature of the task, may contribute to why so few Americans actually complete one; as of 1991, less than 10% of American adults had completed an AD1, despite the fact that most hospitals ask if patients would like to fill one out, and most patients have some familiarity with AD and feel at least moderately positive about them2. Lots of factors determine whether or not a patient will prepare an AD. Age is the single biggest predictor of AD completion (patients over the age of 75 are 3.5 times as likely to have completed an AD than patients under 30), but race, education, and socioeconomic status also play a role5, as does the perceived health of the patient2. The better educated, wealthier, and sicker a patients is, the more likely they are to have prepared an AD2,5.

…and you can’t be disappointed.

Despite the possible discomfort of preparing one, there are clear benefits to having an AD. In a study assessing patients in an intensive care unit (ICU), AD increased the likelihood of the directive being discussed by medical staff with the patient or proxy, the patient’s expressed wishes being discussed, and the likelihood of the proxy initiating a discussion about the goal of care with medical staff (e.g. enforcing a DNR)5. Having an AD also significantly increased the chances that a patient received care that was in line with their preferences6. Not only can an AD improve a patient’s ability to control their end of life care, having an AD, specifically a DNR, can significantly improve the patient’s quality of life in the week before his or her death3.

While having an AD is better than not having one, in order for an AD to be useful, several additional measures have to be taken. Most critically, the AD must be presented to the treating hospital and be included in the patient’s chart. Otherwise it has no effect; it may as well not exist5. Careful selection of a proxy, and clear communication with them about their role and responsibilities are also essential, as is informing other family and friends of your wishes, to avoid conflict later on4.

This is important stuff. Vital, even (yes, pun intended). Because the grim truth is that there’s a decent chance of needing an AD; a study on Americans over 60 found that over 40% required medical decision-making, and over 70% of those were incapacitated6. An AD could well be the only way of ensuring that our final wishes are followed, and it is definitely the only way to give our family and friends the peace of mind that comes with knowing that we were treated as we would have wanted. From this point of view, a living will is a gift to ourselves and the ones we love.

References

  1. Annas, GJ. 1991. The health care proxy and the living will. New England Journal of Medicine, 324: 1211-1213.
  1. Douglas, R & HN Brown. 2002. Patients’ attitudes toward advance directives. Journal of Nursing Scholarship, 34: 61-65.
  1. Garrido, MM, TA Balboni, PK Maciejewski, Y Bao, & HG Prigerson. 2015. Quality of life and cost of care at the end of life: the role of advance directives. Journal of Pain and Symptom Management, 49: 828-835.
  1. McMahan, RD, SJ Knight, TR Fried, & RL Sudore. 2013. Advance care planning beyond advance directives: perspectives from patient and surrogates. Journal of Pain and Symptom Management, 46: 355-365.
  1. Shapiro, S. 2015. Do advance directives direct? Journal of Health Politics, Policy, and Law, 40: 487-530.
  1. Silveira, MJ, SYH Kim, KM Langa. 2010. Advance directives and outcomes of surrogate decision making before death. New England Journal of Medicine, 362: 1211-1240.

Image source: Creative Commons, https://pixabay.com/en/hand-writing-pen-people-author-325321/

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Suzi Claflin

I am a postdoctoral fellow studying chronic disease epidemiology.

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