Imagine that you have been injured in an accident and are unable to make important medical decisions for yourself. Who should make those decisions for you? How will the Doctor and Hospital know who is authorized to speak on your behalf? The law allows you to name your spokesperson, but most people have never made that vital choice.
April 16th is National Healthcare Decisions Day, so it is a particularly appropriate time to be talking about who will decide for us. And perhaps we can even move forward enough to document our wishes in a legally binding manner.
When people think of planning in advance for health care decisions they usually think of living wills. But is a living will the best legal planning tool for you? There are other options for you to consider.
Living Wills are Limited
"Living will" laws were an early legislative attempt to devise a method by which incapacitated individuals could exercise their qualified legal right to refuse unwanted treatment.
With a living will, an individual provides treatment instructions regarding the types of medical treatment and care he or she wants to either receive or refuse at the end of life. This document is typically used by people to describe the point at which they would no longer desire certain types of life-prolonging medical treatment, but it may also document an individual's desire for continuation of treatment. These documents and the related law are very much misunderstood even by the physicians and other health-care providers who are responsible for their implementation. The way decisions are made in real life and the legal rules are often in conflict.
Living wills were the first and remain the best-known and most widely used form of advance health care directive. Unfortunately, many consumers and their advisors fail to appreciate the significant limitations of the living will. Living wills are operative only after your attending physician has declared that you are in an end-stage medical condition or permanently unconscious. But many people who are not competent to make health decisions are not in an end-state medical condition or permanently unconscious. A living will is neither operative nor relevant with regard to questions about day-to-day care, placement, or treatment options, and the many other health decisions that need to be made for non-end of life patients who lack capacity.
The limitations of the living will go beyond its narrow applicability. The living will begins with a contradictory premise - that you are prescient enough to be able to provide truly informed consent about unknown treatment alternatives in unknown circumstances at an unknown future time. It is informed consent based on lack of information. The inadequacy of living wills and to some extent of advance directives in general, has been described by The President's Council on Bioethics:
"Advance instruction directives (or living wills), though valuable to some degree and in some circumstances, are a limited and flawed instrument for addressing most of the decisions caregivers must make for those entrusted to their care.
Living wills, although much talked about and recommended by many people, are not a panacea. They address, at most, but a small fraction of the decisions caregivers must make for incapacitated persons. Even if everyone executed a living will, and even if the instructions were followed as written, the big questions of long-term care and ethical decision-making would not disappear or become readily manageable: there are too many situations in which following orders is not the best way to give care, and giving care always requires more in terms of resources, character, support, and judgment than any legal instrument can possibly provide. We firmly believe that the American people-both potential patients and potential caregivers-should not be misled or encouraged to think otherwise. Moreover, in addition to the practical difficulties with living wills that we exposed in Chapter 2, the duties of actual-as opposed to imagined-human caregiving always arise within concrete situations experienced in the present, not conjured situations imagined in the past. Precisely because the obligation of caregivers here and now is always to the patient before them here and now, instructions written long in advance can rarely be simply authoritative or dispositive.
To be sure, a few of the difficulties with living wills could be ameliorated by improved and more prudent drafting: for example, every writer of a living will should be asked to consider writing into such a document-after, of course, discussing it with the relevant parties-a provision acknowledging that the wishes expressed in the document are based on incomplete information and explicitly authorizing family members and clinicians to override the specific instructions if they judged it would serve the patient's present welfare to do so. Also, rather than write blanket exclusions of specific kinds of potential treatment interventions, advance instructions might explicitly allow for temporary trials of certain treatments, permitting the patient's caregivers to see if the treatments might actually be beneficial without creating a situation in which the treatment cannot be easily stopped. But even such improvements do not address the fundamental limitations and shortcomings of advance instruction directives, which can never replace prudent judgment by devoted caregivers about what a patient now needs. Ethics committees, drafters of professional guidelines, policymakers, and legislators at both the state and federal levels should address these failings and search for more practical and responsible alternatives." Taking Care: Ethical Caregiving in Our Aging Society, The President's Council on Bioethics, (2005), pp 214-215 (emphasis in original).
Health Care Power of Attorney: A better planning tool for most people
As a result of the limitations of the living will, most experts now recommend that you move beyond giving instructions and name a person who will be authorized to make health care decisions for you in the event of your incapacity. As noted by the President's Council on Bioethics:
"Advance proxy directives are much more valuable [than living wills] and should be encouraged.
Instead of attempting to specify what should be done, advance proxy directives specify who should make crucial decisions on our behalf. These instruments ratify our fitting desire to be placed in the hands of loving caregivers whom we trust with our well-being when we can no longer act to promote it ourselves. Naming of proxy decisionmakers provides clear identification of who shoulders responsibility to act for the patient and makes it clear to physicians and others with whom they must deal. Such knowledge makes it much more likely that there will be the desirable discussions between family and professional caregivers at all important junctures of treatment and care." Taking Care: Ethical Caregiving in Our Aging Society, The President's Council on Bioethics, (2005), p 215 (emphasis in original).
A health care power of attorney is a legal document that authorizes a person of your choice (your “agent”) to make health decisions for you if you ever lack capacity. Your agent can act whenever needed, even if you are not terminally ill or permanently unconscious. The document can include guidance as to your philosophy regarding end-of-life care and other situations that may arise.
The appointment of an agent combined in one document with end-of life guidance is sometimes referred to as a "comprehensive health care advance directive." "Because it is more comprehensive and flexible than the other available planning tools, a comprehensive health-care advance directive is the preferred legal tool for planning these types of decisions." The American Bar Association, Legal Guide for Americans Over 50 (2006), pp 107-108
The “Pink Card” – a simple and free first step
Pennsylvania law allows you to name a representative as your proxy to make health decisions for you when you lack capacity. A group in Lycoming County Pennsylvania has taken advantage of this law to develope a very simple method – the “Pink Card” – as a free and easy way for Pennsylvania residents to appoint their health care representatives. Your Pink Card names the person you have chosen. This person will be authorized to guide your treatment if you ever lose the ability to make health decisions.
The Pink Card can be carried in your wallet or purse so that your doctor and other health care professionals will know who is in charge and how to contact that person. You can obtain a free “Pink Card” and explanatory booklet by calling Linkage Lycoming at 570-323-8555, or visiting its website at http://www.stepcorp.org/linkage/linkage.htm.
More information on the “Pink Card” is also available on this blog at my earlier post Making Good Health Care Decisions: What is a “Pink Card” and Should You Have One?
Health care powers of attorney, living wills, and Pink Cards are tools that we can use to maintain some control over important health care decisions that are made for us. It is better for everyone, patients, health providers, and families, if these types advance directives are in place and you have specified who will decide for you.
Advance planning works best if you have also discussed your preferences with your chosen proxy and other family members. To be most effective advance directives need to be combined with communication. But people may be understandably reluctant to start the conversation. I have found that the “Health Care IQ Test” is a useful way to ease into a discussion with your family members about the health choices you would prefer. The Health Care IQ Test can be downloaded free of charge from the Marshall, Parker and Associates website at http://www.paelderlaw.com/pdf/IQ_test.pdf.
For a more extensive discussion on the subject of advance directives and proxy health decision making, see my article A Professional's Guide to Living Wills and Advance Health Care Powers of Attorney in Pennsylvania which is available online at http://www.paelderlaw.com/PA_Attorneys_Guide_to_AD.html.