Why Ethnic Elders Forego Hospice and Palliative Care

Why Ethnic Elders Forego Hospice and Palliative Care

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Virginia Jackson, chief of chaplaincy at the Palo Alto VA Medical Center Palliative Care Clinic. (Gerardo Fernandez/Alianza Metropolitan News)
Part 2. Read Part 1 here
PALO ALTO, Calif.--Dealing with the reality of a terminal illness is something that prompts many African-Americans to look to the clergy and spiritual leaders, but not necessarily for comfort and support in hospice care. Palliative and hospice services around the United States have been disproportionately favored by whites. Among hospice patients in the United States 83 percent were white, while merely 8.5 percent are African-American, 6 percent were Hispanic and less than 3 percent were Asians and all other minority categories, according to a 2012 report of the National Hospice and Palliative Care Organization (NHPCO)
Yet enrollment in hospice care has grown since Medicare first began offering hospice benefits in 1983, with nearly 1.7 million patients receiving services in 2011 -- roughly 45 percent of all deaths in the U.S., according to the NHPCO. Barriers for African Americans, Latinos This comes as no surprise to Virginia Jackson, chief of chaplaincy at the Palo Alto Veteran's Administration Medical Center Palliative Care Clinic.
"With African-Americans, because of trust and fear issues, we take care of our relatives at home," she said. "The issue of trust--not being listened to, not being important--is a big issue with the African-American community. There is a lot of fear around trusting a physician around medication; fear of becoming addicted or fear that it may take them out." 
Jackson continued, "As an African American and minister dealing with our culture from a spiritual aspect, as well, we rely heavily on our faith (not everybody, but a majority)."

Tools for Planning Ahead

Here are some tools you can use to be prepared:

Advance Care Planning: You can make sure your wishes are followed by discussing your values about end-of-life care with your family first. Completing an advance-care directive document is a helpful tool for you to describe what is important to you.

There are two types of advance care directives: A medical power of attorney allows you to name someone to make your healthcare decisions when you can't.

A living will tells doctors your wishes for medical treatment, if you are unconscious or have a terminal illness. You can change or cancel the directives at any time.

These documents may state whether or not you want to be helped to breath mechanically, artificially fed and express how and when you’d like to receive comfort care. But it may not protect your from unwanted emergency medical care near the end of life, like CPR or transfer to a hospital.

An additional, more specific document, is called a physicians orders for life sustaining treatment (POLST). These bright pink forms describe a person's specific end-of-life wishes. They must be signed by your doctor and they give medical personnel clear orders about your wishes. It may include whether you want CPR, or hospitalization. Multilingual versions of the form are available.

Finally, there are do not resuscitate orders (DNR) that can bar unwanted chest compressions, electrical shocks and artificial breathing. DNRs are used most often by the chronically ill and elderly people in healthcare settings to prevent invasive treatments after the heart or breathing stops.

Making Wishes Clear

One question may be when to withdraw medical support, if there is little chance of reversing the disease or injury. Making your family and doctor aware of your goals, values and beliefs, can ease the stress for relatives or friends if they must decide whether to allow the natural process of death to occur.

Write down your wishes in an advance directive and share it with those close to you. Find an Advance Care Directive form for each state here.

Source: California Coalition for Compassionate Care

In the last days, time will be spent in prayer and meditation, she continued, adding, "An African-American family would trust a doctor more who stayed present during prayer, over one who left the room." 
Although most palliative care is hospital-based and its goal is to treat symptoms of disease while doctors continue to pursue recovery or a cure, hospice provides a holistic approach to care for someone who is dying. Hospice allows for reduced pain, spiritual comfort and even aid with day-to-day needs, such as bathing, dressing and administering medication. Getting the word out about these services has not been easy. Lack of trust or familiarity with the medical services that comprise hospice care has also been a barrier among Hispanics. 
Christopher Holguin grew up in the Latino community in El Paso, near the Mexican border at Juarez.
 "I can't think of two occasions growing up that my family went to a doctor. There is mistrust of health organizations," he said. 
Today, Holguin, 37, lives in San Francisco and volunteers at Most Holy Redeemer Catholic Church AIDS Support Group, providing emotional support and home help for two clients with advanced HIV/AIDS. The church serves 85 clients, regardless of religious background or sexual orientation. Not all are terminally ill. But the church has found HIV accentuates issues in aging, creating health problems usually seen in those much older, said volunteer coordinator Peter Toms. 
The AIDS Support program evolved over the years to provide its own hospice-style of care as the needs of its clients changed. That is an issue the larger medical community grapples with in providing hospice resources to minority communities.
"People who choose hospice must give up access to aggressive care and many individuals are not ready to, quote, give up the fight, and may view hospice as giving up," said La Vera Crawley, chaplain for palliative care at Oakland's Alta Bates Hospital.  
Medicare beneficiaries may receive hospice benefits, but only if doctors certify they have just six months to live and they must forego further curative medical care. Yet, once families understand that the majority of hospice care is home-based with the patient and family at the center, it reduces their sense of fear. Lack of knowledge about hospice options remains a barrier in ethnic communities.
"People don't know about hospice. In our culture we don't talk about death," said Silvia Austerlic, Latino cultural liaison at the Hospice of Santa Cruz County.  "With culture it is like an iceberg. You see what is above the surface, but there are a lot of things you don't know," Austerlic said. 
She advocates for "cultural humility." She stressed, "As a provider, I approach each client as [if I’m] a student. I know about medicine, but I don't know who they are." 
Hospice specialists are trying be more culturally sensitive to combat the lack of trust and misinformation issues. In fact, growing number of hospice patients die at home surrounded by family. In California alone, the percentage of hospice patients who died at home increased from 13 percent in 1989 to 32 percent by 2009, while the number who died in a hospital fell from 58 percent to 42 percent for the same period, according to the California Health Care Foundation.
"We are stretching out the last chapter of people's lives," said V.J. Periyakoil, MD, director of the Stanford Palliative Care Education and Training Program.  
The hospice industry is making some efforts to reach out to ethnic communities. The University of Southern California tested brochures portraying black experiences with hospice among a group of African Americans and shared them senior centers, churches, and community exercise programs in greater Los Angeles. In addition, they recommended increase in ethnic employees within hospice care to improve cultural understanding.
"The best hospice experience is to have a peaceful death," said Austerlic. "As a hospice we don't give up hope, we change hope. A patient may say, 'I want to live until my sibling comes from Mexico or until my grandson graduates,'" she said. 
Pamela MacLean wrote this article for RedwoodAge.com as part of a California Healthcare Foundation Journalism Fellowship, a project of New America Media in collaboration with the Stanford In-reach for Successful Aging through Education Program.