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What to Consider When Creating an Advance Health Care DIrective

What is the purpose of an Advance Health Care Directive? If you are an adult with capacity, you have the right to provide instructions about your own health care choices. An Advance Health Care Directive sets forth (1) the person(s) you nominate to make medical and personal care decisions on your behalf should you become unable to make those decisions yourself and (2) the type of care you would wish to receive if you became unable to communicate your wishes. 

What is the difference between an “Advance Health Care Directive”, a “Medical Power of Attorney”, and a “Living Will”? There are different names for documents by which your health care choices are recorded. Sometimes, multiple different documents are prepared to accomplish the two objectives above, namely (1) setting out a decision-maker and (2) expressing your wishes. A document sometimes and variously called a “Medical Power of Attorney” or “Health Care Proxy” or “Power of Attorney for Health Care” nominates a medical decision-maker; a document sometimes and variously called a “Living Will” or “Advance Directive” expresses your wishes regarding the type of care you wish to receive. In California, a single document called an “Advance Health Care Directive” can accomplish both goals, combining the nomination of a decision-maker and the expression of wishes into one document. 

Nominating a decision-maker. The person(s) you nominate in your Advance Health Care Directive to make medical and personal care decisions on your behalf are called “Health Care Agents”, or, simply, “Agents”. Under the law, your Health Care Agents have broad authority to provide, withdraw, or withhold, various sorts of care – but, depending on your expressed wishes, you can direct or limit that authority in various ways. Unless you limit your Health Care Agent’s authority, or provide particular instructions, your Health Care Agent can: consent to or refuse any sort of care (meaning medications, services, treatments, or procedures); hire and fire your health care providers; direct health care providers to provide, withhold, or withdraw life sustaining treatment, such as feeding tubes, ventilators, and cardio-pulmonary resuscitation (CPR); and can make decisions about organ donation and autopsy after your death. 

Expressing your wishes. There are many personal considerations involved in creating your Advance Health Care Directive. As hard as it is to imagine being unable to direct your own medical care, it is unimaginably difficult to be put in the position of making decisions about someone else’s life. One particularly sensitive area of the Advance Health Care Directive is the section dealing with end-of-life decisions. Although it is always possible to include custom language that best fits your situation, generally speaking, end-of-life decisions fall into one of two categories: (1) a choice NOT to prolong life or (2) a choice to prolong life. 

The choice NOT to prolong life is NOT a veiled reference to euthanasia, rather it is intended to preserve and protect individual autonomy and personal dignity. The Health Care Decisions Law explicitly recognizes that adults have the authority to determine and control the care they wish to receive, and that individual autonomy and personal dignity may be violated where life is prolonged “beyond natural limits” when such care does not actually help the patient. (Prob. Code §4650). Furthermore, this Law “is not intended to permit any affirmative or deliberate act or omission to end life other than withholding or withdrawing health care pursuant to an advance health care directive…so as to permit the natural process of dying.” (Prob. Code §4653). 

Per statutory guidance in California, these choices are generally stated as:

  • Choice NOT to prolong: “I do not want my life to be prolonged if (1) I have an incurable and irreversible condition that will result in my death within a relatively short time, (2) I become unconscious and, to a reasonable degree of medical certainty, I will not regain consciousness, or (3) the likely risks and burdens of treatment would outweigh the expected benefits.”
  • Choice to prolong: “I want my life prolonged as long as possible within the limits of generally accepted health care standards.”

The choice to prolong life is relatively straightforward and clear: it is an expression of the wish to have everything done to prolong life as long as possible within acceptable health care standards. A key phrase here is “generally accepted health care standards”. The California Health Care Decisions Law, found in the Probate Code §§4600-4806, specifically protects health care providers and institutions from violating their standards of care: “This division does not authorize or require a health care provider or health care institution to provide health care contrary to generally accepted health care standards applicable to the health care provider or health care institution.” (Prob. Code §4654). 

The choice NOT to prolong life is, perhaps, somewhat less straightforward. What is a “relatively short period of time”? What is a “reasonable degree of medical certainty”? These are not clearly defined terms. But they may be vague of necessity. Science and medicine evolve and change rapidly. For those with terminal conditions who may have a clearer vision of their end-of-life desires and current-at-that-moment medical options, there are additional forms, such as Physician Orders for Life Sustaining Treatment (POLST) which may be appropriate to create in consultation with health care providers, rather than attorneys. However, none of us can know with precision or certainty the circumstances in which we will find ourselves in our final days, and therefore, in making an Advance Health Care Directive, we may need to rely on adaptable language to guide decisions about our final days.  

Many of us may ask ourselves: “why wouldn’t I always wish to have my life prolonged?!” There are a couple important points to consider here. The first is that, for many of us, there is a difference between life with quality (or the hope of regaining it) and biologically being alive. The second consideration, unfortunately, has to do with costs – both financial and emotional. 

In order to fully appreciate and weigh these considerations, one must understand that there are two forms of medically and legally recognized death: cardiac, or cardio-pulmonary, death (when the heart stops beating and breathing ceases), and brain death. “Whole brain death” means that the brain is no longer functioning at all – not in the higher brain, nor in the lower brain or brain stem, which controls basic life-sustaining processes like respiration (breathing), circulation (heart pumping and blood flowing), and digestion (turning food into energy to sustain bodily processes). There are other levels of impaired brain functioning and impaired consciousness, too – such as coma, minimal consciousness, and persistent vegetative states – when higher level brain function is, essentially, absent, but, lower level brain function may persist. Where lower level brain function persists, it is possible that the body self-sustains basic biological processes and that interventions (such as ventilators, which keep respiration going, and feeding tubes, which are necessary to supply nutrients) can be used to maintain biological life. Scientific and medical understanding of the brain, and it’s ability to recover under various circumstances, continues to evolve. The crucial questions become whether any quality of life is present, whether it could ever be recovered…and at what cost. 

Under the current medical system in America, the cost of medical care is borne by the individual, the individual’s health insurance (if the individual is insured and the treatment is covered by insurance), and, where the individual is poor or severely disabled, by state and federal programs, such as Medicaid (or Medi-Cal, as it is known in California). It is extremely expensive to provide life-sustaining treatment to those with impaired consciousness, who cannot feed themselves or perform even the most basic of self-care – and the emotional costs for loved ones are also high. 

By creating an Advance Health Care Directive, you can communicate your wishes and nominate loved and trusted individuals to make medical decisions for you. As long as you are alive and well, you can always change your mind and update your documents. While it may be very helpful to provide your documents to your doctors and to your nominated Health Care Agents – because this will ensure that your wishes are known and can be honored – if you do choose to share your documents, and then you later update them, you must be certain to replace the now-outdated documents, and alert your former and newly chosen Health Care Agents of the changes. An Advance Health Care Directive is a gift of peace of mind to yourself, and to anyone who may, someday, be faced with the monumentally difficult task of making health care decisions on your behalf. 

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