, , , ,

In my various lectures about challenges of diversity in end of life care, I have often stressed to people the need for advanced planning, for it can help identify areas of potential conflict between the family’s wishes and the medical staff providing care. While this doesn’t always work, it allows for conversations to be had long before the conversations need to be had. In a weekly newsletter I receive from the NJHPCO (New Jersey Hospice and Palliative Care Organization) I was directed to an article on the Forbes website about advanced care planning as it relates to the role of religion.

Should I Stay Or Should I Go? What Religion Says About Pulling The Plug

This is a guest post by Wendy S. Goffe, a trusts and estates lawyer with Graham & Dunn in Seattle.

“If I should remain in a persistent vegetative state for more than 15 years, I would like someone to turn off the TV.”

This was the first item Paul Rudnick listed in his New Yorker parody, “Living Will.” But while his 2005 essay continues to amuse, living wills are no joke. They’re extremely difficult to think about and bring oneself to sign. For some people they also raise cultural and religious issues.

A living will, also known as a healthcare directive or advance directive, is a legal document authorizing someone to “pull the plug.” Of course it doesn’t say so that bluntly. Instead, it’s phrased in terms of withdrawing or withholding life‑sustaining procedures for a terminal condition if death is imminent. The provisions –for example, about not giving you intravenous fluids, using a machine to help you breathe or restarting your heart — are nauseating to contemplate. But unless you sign a living will, friends and family may be left to guess about your wishes or doctors may refuse to carry them out. This just adds to their stress at an already stressful time.

A document with directives is obviously the best way to go. At the very least, people should be having conversations about advanced planning. And it is not enough just to have a conversation once or only after a major news story like Terry Schiavo comes along as a wake up call. These are conversations families need to have at times as people age and not merely when it is too late.

Research has shown that advance care planning — communicating one’s wishes about end-of-life decisions to loved ones, even if not in formal written legal documents — can help relieve the stress on families put in the position of having to make these decisions. Yet only about one in three Americans has some form of healthcare directive or document naming a surrogate decision-maker in case they can no longer make decisions for themselves. This may have to do with the complex legal terms used in the documents and what seems like their lack of flexibility to accommodate patients’ values and religious views.

Ironically, while religion plays a strong role in end-of-life decisions, it was the secularization of Western society during the 19th century that allowed people to begin to perceive their own role in end-of-life decisions and to move away from church dogma on such matters. Secularization made it possible to view death as a medical event rather than a religious one.

In the past 30 years, medical ethicists have put more emphasis on patient autonomy and less on physician paternalism. As long as we can think for ourselves, we all have a state and federal constitutional right to refuse medical treatment; it stems from the right to privacy and liberty. But we have to say what we want. Otherwise, under state laws, medical facilities may refuse to end life-support.

An inexpensive solution is to use a living will found online — most large hospital web sites and state departments of health have posted them. But don’t expect it to express any religious or spiritual beliefs you may have about end-of-life decisions, and how these beliefs may direct what kind of end-of-life care may be administered.

Some religious traditions, such as Orthodox Christianity and Orthodox Judaism, advocate an uncompromising commitment to the preservation of human life under virtually all circumstances, regardless of prognosis, cost, the wishes of a family or the quality of life that may result. Other religions, including many Protestant denominations, Conservative Judaism, Christian Science, Buddhism and many Islamic sects, emphasize the right to die with dignity, which would allow patients and families to help decide when quality of life is so diminished that it justifies withholding or ending life-support.

The author does not take into account that many religious groups have begun establishing their own advanced directives specific to the ethical principles that they hold to be true. For example, the Rabbinical Council of America (see here) and Agudath Israel (see here), both Orthodox Jewish organizations, have drafted advanced directives that follow Orthodox medical ethics. While these differ legally from a living will, it provides people the opportunity to begin thinking about these issues. Additionally, she does not fully discuss the aspects of preserving life according Orthodox Judaism, which is actually not as simple as Jews are committed to preserving life under almost all circumstances. As with most ethics systems, there are nuances.

Other factors that may be taken into account and expressed as part of a patient’s advance care planning, include instructions to a decision maker to consider a patient’s values and even to take steps to alleviate concerns related to beliefs about when life begins and ends; spiritual beliefs (in addition to or instead of traditional religious beliefs) and the role of psychics and psychic healers.

Religion can affect many different practical issues. They range from withholding fluid and nutrients, to using heroic measures to prolong life, to medication that controls pain but hastens death or amounts to assisted suicide. When a woman is pregnant, the question arises: is the life of the mother or the baby given preference, or are their rights balanced? Judaism and Islam generally give preference to the mother, Hinduism and Catholicism consider the lives of the mother and the baby to be equally sacred. Religion also plays a role in last rites; organ donation; handling of the body after death and disposition of remains. These wishes and beliefs may also be incorporated into a living will.

In this context, as in others, people may choose to follow or ignore the tenets of their religion. For example, environmentalists might opt for cremation, in spite of the fact that their particular religion may allow only for burial. While some religions encourage autonomous decision making, others, including Orthodox Christianity, many Protestant denominations, the Bahá’í faith, and Islam, for example, call for a consensus — by a group that may be comprised of only close family members or may include clergy.

While the U.S. medical establishment now values delivering bad news directly to a patient or a patient’s family, many cultures believe that it is disrespectful and possibly even harmful to do so. To help doctors navigate these issues, the American Academy of Family Physicians has published guidelines about how cultural factors, rather than just religious ones, influence a patient’s or family’s response to medical issues. In addition to religious beliefs, many individuals are influenced by cultural norms with respect to their views on individualism, end-of-life care, suffering and communication of bad news.

End-of-life care is your choice. Whether your preferences are influenced by religion, culture or other factors, make your wishes known in a document your loved ones can understand. You may think they know what to do. But It’s better not to leave any doubt.

The role of chaplains in this conversation an be valuable. Patients and families often don’t want to talk to their own clergy out of fear that their autonomy will not be taken into account. A chaplain can give them the opportunity to express their own wishes, even if they feel they cannot fulfill those wishes due to outside factors. As someone who is there to accompany people on a journey, the goal is to give them the space needed to have the conversations with someone without them feeling judged by the decisions that are made.