Living Life to the End, Part 2


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In our first article about the end of life, we discussed the common halachic and practical issues that arise at the end of life and the best ways to address them. This second article concerns one the most effective ways to make sure that our wishes are followed in the way we would like: the halachic medical directive.

A halachic medical directive is a legal document that contains an official record of a person’s health care wishes. Typically, a health care directive has two main components. First, it appoints an agent who will speak on your behalf if you are no longer able to speak for yourself or can no longer make decisions. Second, it provides an outline of what approach you would like a medical team to take in caring for you: what kinds of treatments you would like to be done in all situations, what treatments you would like not to be done, and anything that is a priority for you. A medical directive has the force of a legal document and any medical staff will be bound to obey its instructions.

A halachic medical directive contains the usual elements of a regular directive but is also designed for a frum person to make his desire to follow halacha a legally-binding instruction. Most crucially, a halachic medical directive includes a section naming a rabbi who must be consulted when questions of treatment arise. Some versions also include sections for describing a person’s preferences, to be followed in situations where there is more than one halachically-valid option. In addition, some versions outline the halachic guidelines that should be followed in the event a rabbi cannot be contacted.

Like many formal documents that we know we should take care of, the percentage of people who have filled out a medical directive is in inverse proportion to its importance. Filling it out properly takes time and requires us to consider some uncomfortable questions about medical care. Moreover, for it to be valid, it needs to be signed and witnessed. And, significantly, for a medical directive to be truly effective, it needs to be addressed while a person is healthy and of sound mind. Waiting until a crisis hits to fill one out might mean it is already too late.

How Does a Halachic Health Care Directive Help?

There are two main audiences for a medical directive. The first audience consists of medical professionals who might have to make a decision about what care to provide – anyone from emergency responders to doctors in the intensive care unit to hospice nurses. For a frum Jew, a halachic medical directive makes it explicitly clear that the patient wants his or her care to be informed by halacha. This wish must be followed with the same respect given to any other wish expressed by a patient.

In addition, being clear about your wishes can prevent a medical team from doing too much or too little. For example, in some circumstances, halacha does not require a person to be intubated, but if a person has already been intubated, breathing support cannot be removed. Unless there are clearly-expressed wishes to the contrary, however, a medical team might intubate someone as a matter of protocol, potentially creating a difficult and extended situation that could have been avoided.

By the same token, a medical directive will instruct the medical staff about what they should always provide. For example, a medical team might decide that providing further hydration to a terminally-ill patient is futile. A medical directive can make it clear that hydration must be continued.

Finally, the halachic medical directive declares that the patient’s rav must be consulted as part of any important decisions. Unless there is an absolute emergency, with no time to contact anyone, no major treatment will be started or stopped without first receiving halachic guidance. Putting this instruction in a directive as the official record of the patient’s wishes helps ensure that it is taken seriously.

But the second, less frequently considered, audience for a medical directive is the person’s family. Anyone who has been involved in caring for someone who is very ill can relate to the sense that time slows down, and every decision takes on magnified importance. The high levels of stress surrounding the situation are amplified by the pressure of having to make choices which could directly affect how long a loved one has to live. And when several people are involved and they have different opinions about what approach to take, it results in a great deal of friction at a time when calm and peace are most needed.

Spelling out our wishes as clearly as we can, and even simply designating one person to make those decisions, removes a great deal of unnecessary pressure from an already difficult situation. It can prevent the feelings of guilt that often linger as loved ones wonder if they made the right decision or did all they could. And it allows a person’s family to focus instead on what is most important.

Part One of a Directive: Naming an Agent

No matter how clearly a person’s wishes are thought through and articulated, it is impossible to anticipate every scenario that may arise. Medical situations rarely fit neatly into specific categories. This is why choosing a health care agent – someone whom you authorize to speak and make medical decisions on your behalf – needs to be done wisely.

The natural choice as a health care agent is a person’s spouse or child. But, while this is the often the best choice, it is not always the best choice. The fact is that a health care agent has great authority. Practically, a medical team is likely to rely most on the instructions of the health care agent, even when instructions in a health care directive exist. Unless an agent’s decisions are unequivocally at odds with a written directive, medical professionals are unlikely to question his or her recommendations.

As a result, you must feel confident that the person you choose as your health care agent understands your wishes and will carry them out. Ideally, he or she should also be someone you trust to make sound decisions in a stressful situation. In addition, because the agent might need to be consulted by the hospital frequently, he or she needs to be reasonably available on a regular basis. Although a spouse or child often fits this description, in some cases, someone else might be better suited. Sometimes, a relative who is not in the immediate family will be under less pressure and be better able to make a clear-headed decision. Occasionally, people choose an attorney or someone else removed from the family. In any case, it is a good idea for the directive to state that the agent has the authority to act only within the guidelines of halacha, as determined by the rabbi (see next section).

Whomever you choose, make sure your agent knows about your directive and agrees to serve in this role. It is certainly a good idea to have a conversation with the agent and tell him or her about your priorities and the general approach you would like to take, as guided by the rav. Lastly, make sure he or she has a copy of your directive.

Part Two of a Directive: Naming a Rabbi

An important component of the halachic directive is that it names a rabbi, who must be consulted on all important decisions, including questions concerning starting and stopping treatments. Ideally, the language of the directive should state clearly that the rabbi’s halachic decision supersedes any other, including that of the agent or medical staff. (Different versions of the directive have different approaches to this.) In other words, it binds everyone to the halachic guidelines set by the rav. When the rav says there is room for choice, the agent makes the decision most in keeping with the patient’s wishes; if the rav says that a particular question has an unequivocal answer, that ruling is authoritative.

Part Three of a Directive: Expressing your Wishes

Many halachic medical directives also include a section in which a person indicates what approach he or she would like to take with regard to various treatments and interventions. It is important to note that this section is usually derived from a standard medical directive. As a result, it often contains options that most poskim would never consider to be halachically acceptable: for example, “I never want to be given artificial hydration.” A halachic medical directive gives the rabbi the final authority. If he determines that a written instruction is not halachically allowed, his decision will take precedence. It is nevertheless helpful and important to fill out this section as well. Not only does it give direction in situations where a choice is available, knowing the person’s wishes can help even the rabbi make a halachic decision in some situations.

Different versions of medical directives will provide different options. Generally, they ask a person how he or she would like to be treated in particular circumstances: for example, if someone is terminally ill with no medical hope for recovery or if someone can communicate but only minimally. A person can then choose whether he or she wants to receive no treatment, all treatment, or something in between (for example, nutrition and hydration but nothing else). Some documents also leave a blank section in which other wishes can be indicated. Some options to consider are: Do I prefer to be at home, if at all possible? Do I prefer not to be at home? Do I prefer hospice care when feasible?

Because these situations are unpredictable and rarely fit into one category, even the most carefully written medical directive is an imperfect document. A person may indicate a strong preference that turns out to be practically or halachically impossible for any number of reasons. Nevertheless, for all the reasons listed above, it remains a critically important document that can make the decision-making process in the moment immeasurably smoother and more effective.

Where Do I Find a Halachic Medical Directive?

Several versions of this document are easily available. Agudath Israel of Maryland has a version that is specifically tailored for use in Maryland. It includes a card that can be carried in a wallet or purse and can be used as reference in case of emergency. The form can be accessed at http://agudathisrael-md.org/md-halachic-medical-directive/. The Rabbinical Council of America has a very similar form that is available at http://www.rabbis.org/pdfs/hcp.pdf.

These forms, however, include sections for naming a health care agent and a rabbi but do not include a section for detailing specific instructions. Rabbi Moshe Hauer has developed a form, based on the standard Maryland medical directive, which includes thorough halachic guidelines and leaves room for indicating individual choices. It can be accessed from www.bjsz.org.

Some Final Thoughts

Once a medical directive is written, keep it in a secure place where it can be easily accessed in an emergency. If possible, you should give copies to your health care agent (some recommend giving your agent the original), your doctor, lawyer, and/or rabbi. If you already have a medical record at a local hospital, it is worthwhile to see if the directive can be made a part of the record, so that it is on file. At the very least, make sure that those who will need your directive know how to find it.

Finally, even once a medical directive has been completed, it is worth reviewing it every so often. Our priorities and wishes may change over time, sometimes in ways we cannot anticipate. We might, for example, have new ideas about what is meaningful to us or about pursuing certain treatments. A medical directive should reflect those changes. In addition, it should be reviewed to be sure that the people we have chosen to speak for us are still the appropriate choices.

While this may seem like a lot of work, it does not in fact take a great deal of time or effort to complete a halachic medical directive. Hopefully, this article can serve as a guide to make the process easier and the result more effective. In any case, the benefits that this document provides, both in making sure that care is provided in accordance with a person’s wishes and in removing some of the burden of these decisions from loved ones, is well worth the effort. Hopefully, this will allow everyone involved to provide the best care possible and to do so with a sense of calm and peace of mind.

 

Rabbi Daniel Rose is the rabbi for Jewish Hospice Services for Seasons Hospice and Palliative Care. He is also the Assistant Rabbi at Congregation Bnai Jacob Shaarei Zion.

 

 

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