Making Decisions about End of Life Care

New developments and new ways of looking at death are changing the way we make end-of-life decisions

Healthcare decisions can be a major cause of stress for end-of-life patients and loved ones, particularly when they don’t fully understand their options or their rights. When patients don’t know their options, it is impossible to clearly convey their wishes to caretakers, leading to a less-than-satisfactory end-of-life experience and added stress at an already emotional time for friends and family.

One particularly confusing and emotional decision revolves around three familiar words: Do Not Resuscitate. The decision to sign a “Do Not Resuscitate” form can make family members feel as if they are giving up, condemning a loved one to a death that might possibly be delayed. But the decision is more complicated, if one can imagine, than choosing simply life or death. It is a quality of life issue, a patient’s rights issue, a question of compassion, and not simply life or death. A patient may prefer to forgo or discontinue life-sustaining medical interventions if they are causing suffering, but be beyond their ability to communicate their preferences, and family members are frightened when faced with the phrase “Do Not Resuscitate”.

An alternative to the Do Not Resuscitate (DNR) order is making its way into the language to re-frame the way we view the decision. The phrase “Allow Natural Death” seems to soften the blow and, to some, better describe the action. Allow Natural Death is a much more empowering order than the traditional phrase, implying a patient’s right to a comfortable end-of-life experience, and the choice of the circumstances and location of their death.

Discussing end-of-life options with terminally-ill patients and family members early on can sometimes make them feel pessimistic about their futures, but to avoid it will only add to the difficulty of the final decision. The evolving conversation surrounding death and promising new developments in end-of-life decision-making are trying to make the discussion easier for everyone involved– and to better ensure that a patient’s wishes are met.

Researchers at Pennsylvania State College of Medicine and Pennsylvania State University have developed a program that assists patients in making these decisions ahead of time. The program helps patients work through their difficult options and produce an advanced healthcare directive, or living will. This directive clearly explains to doctors what the patient’s wishes are for their final days. The program can help patients face these questions early on, and the research indicates no signs that patients are less optimistic about their futures after completing it. The program may offer patients a more comprehensible way to learn about and think through their end-of-life decisions.

Another program, promoted by the Coalition for Compassionate Care of California and the California HealthCare Foundation, is a form called the Physician Orders for Life-Sustaining Treatment. Adopted in many healthcare facilities throughout California since 2009, POLST is a form signed by a physician that allows a patient to specify what kind of end-of-life care they wish to receive. A recent study concluded that patients with POLST forms received much less unwanted medical intervention and hospitalization than those without.

The changing conversation about death offers an opportunity for end-of-life patients and their families to change the way they experience this difficult time, and to reclaim some of the sovereignty that seems to be taken away with a terminal diagnosis. Certainly, the most important thing anyone can do to ensure that their end-of-life experience is the one they want is to become educated early on about one’s options and rights as a patient. Continue to follow new developments like these programs and understand new ways for discussing end-of-life decisions with loved ones and conveying them to a physician.

Sources:

Los Angeles Times

USA Today

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