For too many blacks, end-of-life care is taboo
Former Governor Sarah Palin’s comments that “death panels” would be used as part of the president’s health care reform plan to decide who is worthy of life or death were absurd. However, she highlighted a topic that is rarely discussed, especially in the African-American community, which is what we want to happen at the end of our lives.
“Some think if they don’t talk about end-of-life it won’t happen,” says Shareefah Sabur, director of planning and evaluation at the Hospice of the Western Reserve. It may seem morbid to discuss one’s final days while young and healthy, but it’s actually the best time. Otherwise, people can become too ill to make those decisions for themselves, leaving the burden on family members to guess what the person would want.
Most of us remember the Terri Schiavo case. She was the 26-year-old who suffered brain damage due to lack of oxygen when her heart stopped. She remained alive for 15 years in a vegetative state, with her husband and parents fighting one another over withdrawing the feeding tube and other measures that kept her alive.
The case reminded us that end-of-life decisions come earlier for some than others. All adults should be talking with their spouses and family members about their wishes. If a document is drafted, but no one knows what it says, it is useless to the physicians caring for that person. There needs to be open discussion early on.
Advance directives, or living wills, are the documents in which one can outline his or her wishes. This can be done at any point in adulthood, and can be changed if those wishes change.
These documents typically discuss what should happen if a person becomes brain dead, or has suffered an injury or illness from which they cannot be cured. It focuses on quality of life. Unlike the typical Hollywood resuscitation, aggressive medical treatment can be painful and uncomfortable. Some people would rather not have chest compressions or have their heart shocked if they won’t recover a meaningful life afterward.
Research continues to show that African-Americans are less likely than any other ethnicity to create advance directives. One University of Hartford study showed that even after end-of-life choices were explained to a group of African-Americans, three fourths of the participants still refused to complete advance directives.
Many in the field cite mistrust of the health care system, spiritual beliefs and personal views about death as barriers to end-of-life decisions among the African-American community. Others feel it is taboo or bad luck to mention such issues.
The most frequently tossed around end-of-life term is “DNR” which stands for “do not resuscitate.” Sometimes, people reach the point in their illness where, regardless of what happens, they – or their families, if the person can’t decide – choose not to be resuscitated. That is considered a DNR order. Others opt for a conditional DNR order that goes into effect only if they develop a terminal illness or if they are not of sound mind.
DNR does not mean “do not treat.” For example, people with bad pneumonia may require mechanical ventilation to help them breathe until the lung infection is treated. However, it is not the same as being put on terminal “life support” per se, as the reason for being put on ventilation is treatable and reversible.
If someone doesn’t want any medical treatment – such as antibiotics, IV lines, blood tests, artificial feeding or medications – and opts only for treatments that promote comfort, that’s a comfort care order. If such an order is decided while someone is ill, it will essentially allow nature to take its course, either in the hospital, at home, or in hospice, while keeping the patient comfortable with pain medications if needed.
A hospice is an end-of-life choice that few know about. It’s a service – either at home or at a facility – that takes care of people with six months or less to live.
“What many people don’t know is that many studies have shown that people with terminal illness live longer and better with hospice care than they do under aggressive, futile treatment,” says Amy Tucci, President and CEO of Hospice Foundation of America.
Hospice is underutilized in the African-American community. African-Americans make up 13 percent of the population, but only 9 percent of those in hospice care. “African Americans have always tried to care for family on their own and the idea of surrendering some of that care may be culturally counterintuitive,” says Tucci.
The main goal of end-of-life conversations with physicians is to understand the many options. There is a wide spectrum between DNR and “do everything.” Patients and families can also pick and choose certain treatments, so long as it makes sense to the overall goal.
With respect to Palin’s claims, several experts have debunked her speculations. But, unfortunately, the clause may still be removed from any final bills. Tucci, who supports the end-of-life section of the bill, feels policymakers had patients’ well-being in mind. ”[It] doesn’t mean that people should be forced to choose hospice care or any other kind of care – but they should certainly know the choices they have.”