Photo: Bradley T. Rosen, MD, who directs the Cedars-Sinai Supportive Care program in Los Angeles is show explaining end-of-life care.
LOS ANGELES--According to the California Healthcare Foundation (CHCF), a majority of people in a 2010 multiethnic survey CHCF conducted said they have planned for their care at the end of
The most common emergency medical procedures for preserving someone’s life are cardio-pulmonary resuscitation (CPR), tube feeding, artificial hydration and uses of a ventilator to enable a person to breath. However, each involves risks that are not depicted on TV dramas and which can make the wish to have every life-prolonging measure done less desirable at a different time. Here are four frequent misconceptions about them.
Misconception One: If a patient fills out an advance health care directive or POLST form (physician orders for life-sustaining treatment), does that mean a patient stops receiving unwanted treatment?
Answer: According to Ming Hau Chen, director of Chinese American Coalition for Compassionate Care, (CACCC) the purpose of those two documents is to let patients die with dignity. However, it does not affect a patient’s regular treatments or emergency treatments. Short of a life-threatening situation, doctors will do everything needed to improve one’s health status.
Misconception Two: CPR is the best way to rescue a heart patient without causing a patient harm?
Answer: According to research, hospitals save about one-in-five patients in the United States using CPR. However, CACCC’s Chen said CPR could possibly lead to broken bones in seniors or cancer patients, who tend to be fragile and less able to withstand the chest pumping impact, such as on their breast bone or ribs.
Misconception Three: Tube feeding could help unconscious patients receive nutrition?
Answer: If a person has serious, ongoing trouble swallowing and can't get enough nutrients by mouth, a feeding tube may be put directly into the stomach through the abdomen. (Doctors call this procedure percutaneous endoscopic gastrostomy, or PEG. While this is a life-saving technique, Chen explains that a feeding tube can impose a big burden to a patient, because many with serious illness can’t digest and absorb nutrition.
As a result, the nutrient may accumulate in a patient’s abdomen and extremities leading to swelling in the limbs (edema), abdominal pain, diarrhea and even a buildup of fluid in the lungs (pleural effusion).
Misconception Four: Artificial hydration always helps patients gain needed fluids and reverse dehydration?
Answer: A common complication of artificial hydration’s side effect is that water or salt can build up and not easily exit patients’ bodies. Like tube feeding, this can causing limb edema and pleural effusion. In addition, most seriously ill patients can no longer satisfy their thirst through the tubes. Tubes also must be monitored to prevent infections.
CHCF showed that when patients consider dying, the idea of prolonging their lives at any cost is surprisingly not one of their main concerns. Most people worry more about becoming an economic burden for their families, relieving physical pain and becoming mentally prepared for death.
Also, 67 percent of Asians and Pacific Islanders interviewed for the CHCF survey--second only to the 75 percent of whites -- said they would prefer to die naturally, while only seven percent said they would rather have all possible treatments to keep them live.
Almost six in 10 Californians surveyed said they’d like to make their end-of-life wishes known, but less than one-quarter of them actually write their wishes in an advance health care directive document.
Discomfort With Advance Care Forms
Barbara, a palliative care patient at Cedars-Sinai Medical Center in Los Angeles, admitted during a presentation there that she hasn’t made out her advance directive, but feels uncomfortable when she thinks about doing it. Barbara, who asked not to include her full name, has chronic obstructive pulmonary disease (COPD). She said, “The physician and nurse have encouraged me to prepare an advance directive, but I am not yet mentally prepared.”
Conceding that her reaction is more emotional than rational, she added that she worries about filling out the directive and having a doctor stop her and letting her die “if my breath is too slow or little to be detected.”
In fact, many patients have similar fears to Barbara’s. Another patient, Mrs. Chen, declined to indicate on an advance directive her wish to be cremated. She feared that a doctor might pronounce her dead after not detecting a very slight breath.
But, Bradley T. Rosen, M.D., who heads the Cedars-Sinai Supportive Care program explained that patients could select a person to handle their health care choices and discuss the matter with them. For example, for a patient like Barbara or Mrs. Chen, they could state, “The doctor must make sure I stopped breathing before determining I am dead.”
Karl Steinberg, M.D., chief medical officer at Shea Family Health in the San Diego area, emphasized that most physicians are trained to rescue patients as their primary mission, and many choose the most drastic methods to save patients’ lives. However, those methods may not the best options for patients. For example, cardio pulmonary respiration (CPR) is not the simple live-saving measure people may see depicted in TV dramas. Actually, The procedure often may break a bone, especially risky for seniors.
Palliative care experts advise adults--preferably everyone ages 18 and older--to prepare two different documents stating their wishes. An advance directive can include more details about what people would want to happen if they can no longer communicate, such as if they are in a coma. And they can designate a person to speak for them to see that their wishes are carried out. After someone fills out the form, he or she needs to find two witnesses to sign on the form, but it’s not required to have a lawyer sign it.
The other, shorter document is a Physician Orders for Life-Sustaining Treatment (POLST). This often-pink form--signed by both the person and his or her physician--is a doctor’s order for other health care professionals to follow.
The POLST form gives seriously ill patients more control over their end-of-life care, including medical treatment, and whether or not to take extraordinary measures, such as CPR or use of a ventilator or feeding tube. A POLST form can prevent unwanted or ineffective treatments, reduce patient and family anguish, and ensure that a patient's wishes are honored.
Steinberg also noted that many people confuse palliative care with hospice, which is part of the broader palliative care. Palliative treatment can include both appropriate medical interventions and non-medical comfort care. Hospice, only covered by insurance for those with less than six months to live, includes only comfort care. Palliative care, he said, aims to maintain a patient's dignity and quality of life.
Palliative care, he explained, can begin well before hospice. For example, cancer patients in palliative treatment could receive radiotherapy or chemotherapy while also receiving comfort care to help to reduce pain, the side effects of medicine, as well as psychological and spiritual support.
Palliative Care Patients Live Longer
Considerable research now shows the benefits to patients. For instance, a 2010 New England Journal of Medicine study found that patients receiving palliative care live almost three more months on average than patients who didn’t receive it. Those on palliative care also experienced less depression.
In the CHCF study, six in 10 of all respondents said they did not want bother their families when making end- of- life wishes, about the same proportion as Asian and Pacific Islanders. While just over four in 10 among all ethnic groups questioned said they had discussed their wishes with their families.That was true of only one-third of Asians and Pacific Islanders (API).
In the API group, four of 10 said they don’t do so because they have more urgent things to take care of, and one-quarter said death is still an untouchable topic.
Misunderstandings about palliative and hospice care also make many patients reluctant to talk about their wishes. The major misconception is whether patients need to pay doctors to discuss their end-of-life choices. Former Alaska Governor Sarah Palin described the idea of paying doctors for occasional end-of-life talks, proposed as part of the Affordable Care Act, as a plan to create government “death panels.” The resulting national outcry caused Obama administration to drop the provision before Congress passed it.
Although the measure, which would have paid doctors every five years to take the extra time needed for this complicated talk, would have involved more Americans, as any patient has a right to decide if they want to receive palliative care or hospice. The final decision is still in each person’s hands.
Stephanie Wu wrote this article for Chinese Daily News/World Journal with support from a New America Media Palliative Care Fellowship funded by the California Health Care Foundation.