Confronting a ‘Conspiracy of Silence’ With End-of-Life Care in Ethnic Communities

A patient in a hospice setting. (Photo credit: Novant Health

A patient in a hospice setting. (Photo credit: Novant Health

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It is a most dreaded conversation — the talk that comes when all therapeutic options have been exhausted and a doctor and patient must confront death. It’s a conversation made all the more difficult when doctors must reach patients across language and cultural barriers.

Last week’s implementation of the End of Life Options Act in California, which allows certain terminally ill patients to access and self-administer life ending drugs, put the spotlight on these discussions and other aspects of palliative care, a medical specialty that focuses on relieving the pain, discomfort and emotional distress of patients with serious illness or in the process of dying.

Compared to elderly white patients, Asian, Hispanic and Black patients are significantly less likely to plan ahead for when they are no longer able to make their own medical decisions, according to a number of studies.

In one study, 40 percent of white patients communicated those wishes in an advance directive, compared to just 16 percent of elderly blacks. In another survey of 200 seniors, none of the Korean American subjects and very few Mexican Americans had made any such plans.

More broadly, nearly all doctors have difficulty talking about end of life care with their patients, according to a 2015 Stanford University study of 1,040 physicians. Doctors had greatest issues with navigating interpretation and medical translators, spiritual beliefs about death and dying, patients’ cultural beliefs and values, cultural differences in decision making, health literacy and mistrust of the health care system.

Discussions of death are viewed by some cultures as offensive or as summoning death to arrive sooner. Others believe discussing death with a patient directly could cause them to lose hope or decline.

Vincent Nguyen, the palliative care director at Hoag Hospital, describes a “conspiracy of silence” in many Asian families between family members and the patient, an attempt to shield the other from bad or difficult news.

“How do we cross this cultural bridge where death is not talked about? People say, gosh, do you want it to come? You cursed this person to die sooner,” said Nguyen. “That taboo needs to be gently approached…so people talk about what’s important, before a life-or-death situation comes.”

Although advocates of aid-in-dying drugs often frame the conversation as a matter of individual choice, in cultures where there is a strong emphasis on family and community, patients often want to include their family in decision-making.

“You ask people what’s important to them.  Not all Vietnamese patients and families are the same. So I need to understand how decisions are made – who is involved, the family hierarchy,” said Nguyen. “Is Dad at the top of the hierarchy, or is it the mother or oldest daughter?”

The Role of Religion

Religion often has a big impact. Many faiths, such as Islam, Catholicism and some other Christian denominations, believe that life is a gift from God and prematurely ending life, or assisting an individual in their death, defies the belief that only God can decide how long someone lives and when they will die.

Many doctors opposed to aid-in-dying laws like Nguyen, a devout Catholic, believe that palliative care and other measures, such as removing a feeding tube and decline life-saving procedures, allow patients to die naturally and maintain their dignity.

“We’re not here to eliminate the person, but eliminate the pain and suffering that afflicts them,” Nguyen said.

Hoag Hospital, Nguyen’s employer, is among the 48 Catholic-affiliated hospitals statewide that have opted out of the law.

Beyond religious opposition, the state’s aid-in-dying law has revived a long-standing debate in the medical community about whether allowing patients to end their own lives is a violation of the Hippocratic oath to “do no harm.”

While some view euthanasia as a patient’s fundamental right that can prevent unneeded pain and suffering, others are concerned that it will encourage already vulnerable patients to give up; cause doctors to mistake the natural depression and grief that often accompanies serious illness for a desire to end life; or become an easy option that families turn to, rather than helping patients cope with pain through adequate treatment and emotional support.

Mai Phuong Nguyen, an Orange County-based minority health advocate and internist who currently provides telemedicine and home hospice care services, is concerned that too many doctors, especially those in ethnic communities, will opt out of the law, and leave monolingual and minority patients who want to consider life-ending drugs with few options.

“It’s such a loaded arena – doctors bring a lot of their personal feelings into offering end of life services. We’re the gatekeepers of this option,” Mai-Phuong Nguyen said. “A lot of [local community health groups] haven’t started touching this because everyone is afraid of bringing it up. But it’s going to hit the headlines and people will start asking questions.”

Amidst a sea of different cultural and religious beliefs about dying and cultural differences in communication, one of the simplest ways to respect a patient and their family is by asking questions, said Jay W. Lee, a past president of the California Academy of Family Physicians, which has not taken a position on the aid-in-dying law. Lee is currently an associate medical director at MemorialCare Medical Group in Long Beach.

“Historically, a lot of continuing medical education is about ‘this is what Koreans do, or this is what African Americans do,’ and I think that’s offensive,” said Lee. “It’s more about learning a process of how to ask the right questions so you can gain a better understanding of the person’s values.”

When first broaching the subject of death or advance care planning with patients, Lee says he asks broad questions about values and preferences before asking more specific questions about life-saving medical procedures.

The conversations can be a negotiation between the unspoken fears of the family and the desires of the patient. Oftentimes, Lee said, he is trying to help everyone in the family get on the same page.

“I ask, ‘what are the most important things to you now?’ It’s really critical that the patient says those things in front of the family,” said Lee. “Sometimes it’s pretty straightforward…and other times, it comes as a complete surprise.”

Translators in Short Supply

Having a nuanced conversation through a translator, however, can be challenging, and at times life-threatening. Many languages lack direct translations to medical terminology. Depending on a patient’s knowledge of healthcare, most conversations need to be translated into layman’s terms without sacrificing clarity.

Although Lee – who speaks fluent Spanish – says interpretation is a high priority at MemorialCare, statewide there’s a shortage of certified medical translators. As of 2015 there were only nine certified medical interpreters for Vietnamese, one for Tagalog and one for Hmong-speakers.

Kate O’Malley is a senior program officer at the California Health Care Foundation, which has worked with hospitals across the state to develop palliative care teams and to train interpreters and physicians on how to work together. The foundation has not taken a position on the aid-in-dying law.

“A lot of being an interpreter is very complex. You could be in the baby clinic doing interpreting for immunization, and be paged to palliative care to talk to fifteen family members about their loved one,” said O’Malley.

O’Malley recommends physicians set the tone for interpreters and help them understand the situation they are walking into.

“An interpreter is a member of a team, not some widget that you just plug in,” O’Malley said. “Before you step into the room for the conversation, you have to have a briefing session with interpreters about the situation and family dynamics, so that you can be a team entering the situation.”

In addition to language and cultural barriers, many detractors of the aid-in-dying law point to the limited supply of palliative care services statewide.

According to a report by the California Health Care Foundation, most California counties are only equipped to handle 30 to 40 percent of the patients who will likely require palliative care during their last year of life.

Orange County is equipped to handle about 40 percent of these patients, according to the report.

Marilyn Golden, a senior policy analyst at the Disability Rights Education and Defense Fund, questions whether life-ending drugs are a true choice in a health care system with limited options and for patients who are already vulnerable.

Whether due to a bad doctor or language barriers, Golden says some patients may not realize their full spectrum of options, or they may even live past their terminal prognosis.

“There are a lot of people whose lives will be lost due to mistakes, abuse, or the lack of availability or lack of knowledge of what services are available,” Golden said.

Meanwhile, George Eighmey, president of the board of the nonprofit Death With Dignity that has advocated for aid-in-dying laws, believes the passage of these laws would actually spur medical providers to improve palliative care options.

“We have found that in those discussions where the patient brings this up, the doctor’s first reaction is ‘what have I done wrong,’ and they think, “am I giving you enough palliative care or psychological evaluations?’” Eighmey said.

Lee, who has not decided how he would act if a patient approached him about life-ending drugs, believes most patients will not pursue a lethal dose of medication if they know they have choices through palliative care.

“I don’t know how I’m going to feel, but it almost doesn’t matter what I feel,” said Lee. “My job is to help my patient, and I don’t think it’s fair to be dogmatic about something I’m not sure about yet.”

Contact Thy Vo at tvo@voiceofoc.org or follow her on Twitter @thyanhvo.

  • James Leonard Park

    Discussing pain-medications
    might be the easiest place to begin,
    since everyone wants to reduce the suffering if possible.
    And if the suffering gets beyond what can be controlled
    by pain-medication, then the patient-and-family
    might be willing to consider terminal sedation,
    which will keep the patient asleep for the duration of dying.
    When end-of-life decisions are already being made,
    it will not be quite so difficult to introduce
    the most liberal of the end-of-life medical choices.
    http://www.tc.umn.edu/~parkx032/MMMD.html

    • Jacki Livingston

      Pain medications are being denied more and more to those who live with chronic pain. They are never going to stop this idiotic swing to stupidity so they can medicate those who will die before the next election. Frankly, they don’t care about those living with chronic pain, so why would they care about those dying with it?